NINE YEARS WITH A SPINAL CSF LEAK

“There is so much rejection, pain and woundedness among us, but once you choose to claim the joy hidden in the midst of all suffering, life becomes celebration. Joy never denies sadness, but transforms it to fertile soil for more joy.”

– Henri Nouwen

January marked nine years since my accident (a ladder fall) which means I have now spent over nine years living with a spinal CSF leak & arachnoiditis.

Nine years – that’s a long time.

Nine years of pain.
Nine years of endurance.
Nine years of medical support.
Nine years of a changed life.
Nine years of restrictions.
Nine years of daily struggle.
Nine years of trying to understand what actually happened to me that day & what has happened to my body since.

It’s not been easy. In fact it’s never easy. It’s always been hard.

And yet…

Nine years does become something of a new normal.

To the extent I have almost forgotten what it’s like to have a body where pain is absent, when you don’t have to spend all day every day managing distressing symptoms. When I had more choice about what to do and how to do it.

The current ‘normal’ has at least become more manageable. As I have learnt more about what is wrong, how to manage it, how to work with my body, accept it and make the most of the life I have. Now that I have treatments that help me to keep the worst debilitation at bay and to treat the radical relapses that can seemingly ‘take me back to the start’.

So as I reached my nine years anniversary I decided to connect again with others suffering. Whether at the start of your journey or many years in – I write for you to know that someone understands. Our lives and stories are always unique, and yet similar experiences do bring an affinity, That can help us to feel more seen and heard ourselves.

I also continue to write and make videos to educate others. Whether it’s those suffering, those caring for them, friends and family that are trying to understand or even the medical professionals that treat them. I know that true life stories can be powerful. To welcome someone into your world. To speak up for yourself and for others suffering like you.

Because if we are not heard then nothing will change.

And in the world of CSF leaks (& arachnoiditis) things still need to change – a lot. Much has already changed in nine years regarding spinal CSF leak research … and yet there is still so much further to go. The stories still regularly exist of people struggling to be listened to and diagnosed. Those simply not believed and shut out from the medical care they need. And those despairing because they can’t seem to get well however much treatment they may have because unfortunately the quicker you are diagnosed and treated the better the potential outcome of treatment.

So I firstly made a new video about a month ago. It’s quite a comprehensive update so it’s 30 mins long. This blog article is to compliment that and also enable people who do not speak English well to translate it more easily.

My videos and this blog post were also written in reflection and response to having had MRI’s from October 2023 reported by a neuroradiologist and my specialist consultant neurologist saying that they can still see my leak in the cervical and upper thoracic spine (extradural fluid) and it remains unchanged since my last CSF leak protocol MRI’s in September 2019. So that has confirmed that I am still leaking. This is why I wanted to focus this article and my video on my leak rather than my arachnoiditis symptoms. Although as I say in the video – it’s often so hard to really know which is which because of all the overlaps and also because my symptoms and scans point to both injuries being caused by the original ladder fall. So they developed together.

NINE YEARS WITH A SPINAL CSF LEAK YOUTUBE VIDEO
https://youtu.be/u5sVPPr1Rm4?si=lffBd05lc23dWMwM

Here is the content summary of the video which can be found below the video on YouTube and can be used to skip to different parts of interest.

VIDEO CONTENT SUMMARY

2:29 Arachnoiditis flares bring more classic postural CSF leak symptoms
2:48 I can be upright most of the day
3:06 Consistent and similar symptoms throughout the day
4:36 Arachnoiditis vs spinal CSF leak symptom confusion
5:40 Stopping invasive spinal procedures
11:11 Leak symptoms: Fuzzy/ dizzy/ dreamy equilibrium
11:38 Constant head pressure sensation
11:50 Neck stiffness
12:36 Phonophobia & Photophobia
13:06 Concentration and cognition limitations
13:42 Travel in cars and planes tough
14:50 Hyperreaction to ICP (intracranial pressure) changes
16:43 Can I still work?
19:16 There is still life and hope
20:40 I had 4-5 years of clear scans at start
21:40 Finding your own daily rhythm
23:53 Learning from others whilst understanding our uniqueness
25:50 ‘A marathon not a sprint.’
27:18 Be careful with getting fixated on getting fixed
28:02 There is a life to live even if you don’t get fixed
31:08 What about the future?

I am not going to write about all the content because I talk so much about it in my video. But I would like to reflect on a few important aspects of it.

SPINAL CSF LEAK SYMPTOMS

Firstly I talk quite a bit about some of my most prominent spinal CSF leak symptoms. The main problem I have in talking about them is that there is so much overlap with my arachnoiditis symptoms that it’s hard to always tell which is which.

Also these days many of my main symptoms are no longer so ‘classic’ in the sense that my headache is not postural anymore (unless I am in an arachnoiditis flare). And it’s also not ‘second half of the day’ in the sense that it gets worse the longer I am upright due to slowly loosing spinal fluid. I can actually be upright most of the day – although never without many symptoms. I do tend to lie down about 4-5pm but not because the headache has increased in intensity. But due to the fact I am utterly worn out by spending my whole day mainly on my feet. Managing my symptoms by keeping on moving about and walking around 10,000 steps a day. I cannot sit comfortably so lying down is my only chance to really rest. I do then lie down a lot of the evening to rest – but can get up to make and have dinner and do other things if I need to. I often do need to get up a bit or my lying down headache gets increasingly bad.

So really, my symptoms are pretty consistent throughout the day. I actually wake up with a headache, have headaches and feel pretty ill overnight if I am awake at all and have headaches lying down for any length of time – as I just said. So sometimes being upright improves my headache somewhat. As does walking and moving around.

For some reason staying in one position for any length of time makes all my symptoms worse – my head, neck & spine pressure increases, my thinking becomes cloudy and the pain quickly escalates to unbearable levels. Whether that’s standing, sitting or lying down. Although sitting is one of the worst positions for me that is perhaps more linked to the arachnoiditis. As is the typical need to keep on moving about to manage the pain, pressure and leg weakness that actually builds if I stay still. (Unless in a relapse – then walking causes my legs to get weaker).

My symptoms could also be somewhat affected by increased spinal fluid pressure (or volume) at times due to the arachnoiditis and subsequent CSF flow issues. And perhaps due to my body overcompensating in spinal fluid production due to the leak.

But it’s very very complex. And many doctors could only really theorise like I do. As a leak goes on long term (& during recovery) it can be very hard to differentiate higher or lower pressure (or volume) symptoms.

It is also possible that the leak helps somewhat regulate my pressure now. Like a natural shunt. Hence I could be at risk of a massive rebound high pressure issue if the leak was ever actually fixed.

STOPPING INVASIVE SPINAL PROCEDURES

Which brings me on to my next major point. The decision to stop further invasive spinal scans and procedures such as CT Myelogram (CTM), Digital Subtraction Myelogram, (DSM), epidural blood patches and surgeries. For me it’s just FAR too risky to the arachnoiditis.

I haven’t got the time to tell the story here – but I do on the video in the section where I talk about stopping invasive procedure’s. My last invasive spinal procedures were in September 2017. At that time I had a CTM And, we then followed up with a 40 ml blind epidural blood patch a week later. And I was subsequently in extreme pain which acute symptoms following both procedures. I had in fact been in a relapse prior to them. Which meant my undiagnosed arachnoiditis was in a massive flare up. Following the CTM I had a tonic clonic seizure in the recovery ward and was extremely ill and sick for the next 24 hours or so. All my normal symptoms were also made acutely worse. So we decided to try a lumbar EBP because we feared the lumbar puncture had perhaps given me a new leak & also in the hope it might have treated the old leak. That also caused me immense pain in my spine and head. I had to stay in hospital a number of days but struggled for months with severe head and spine pain we thought could perhaps be attributed to rebound high pressure. But in hindsight I think it was more complex than that because of the undiagnosed arachnoiditis.

So in summary – for me further invasive scans (that require LPs and contrast) are too risky. As are EBP and surgeries. Anything that goes anywhere near the leptomeninges feels too much risk of accelerating the arachnoiditis.

I do have friends with arachnoiditis who have had surgery on leaks and there were often complications which could often lead to the surgery failing or new leaks appearing perhaps due to the subsequent pressure surges. So it’s just not simple.

MONITORING FOR SUPERFICIAL SIDEROSIS

What could change that decision though is if I do develop Superficial Siderosis – which leak experts across the world are beginning to note as anything between 10-50% (and sometimes even more) likely from long term (especially ventral leaks which mine may well be). Especially those of 10-20 years. It’s an iron deposits (deposition of haemosiderin) build up in the brain or spinal canal from long term leaks or bleeds in the nervous system etc. And the only way to stop its progression would be to seal the leak.

But we shall cross that bridge if it comes and in the meantime I am having special MRIs to monitor for it.

HOPE FOR THOSE SUFFERING

Finally I wanted the video to provide some hope for those recently diagnosed or suffering with a spinal CSF leak long term. Because it’s often an awful thing to experience and the thought of living with something like this long-term just seems impossible. Which can often lead to utter despair and even suicidal thoughts.

So I wanted to say that you CAN live with this condition long-term. It is so very difficult. It’s so life changing and every day is spent managing symptoms and pain. Your life does have to change and that takes a long hard process of grief and letting go of who we once were. But I do believe we can learn to thrive despite it that doesn’t mean that we will feel like with thriving, but it can be a possibility and a part of our life again.

I actually made a video in the summer called ‘Learning to Thrive Despite Having a Chronic Illness’ which was all about the journey of learning how to discover a new way of life despite our injury, restrictions and challenges.

I never want to minimise how hard it is to accept our conditions and learn how to discover the best life we can despite them. I am also very grateful to be fortunate to currently have so much time out of bed, and still have the ability to walk so much which helps in what I am able to do. However, I haven’t always been able to do what I can now and have experienced many months and many years of spending a lot of my day if not all of my day in bed.

And in the end, we have no choice. We have to find a way to live like this because the only other option isn’t an option, especially when you have a family and children who need you.

I will keep on telling my story, and letting you know the twists and terms and the ups and downs of how it develops. The future is full of unknowns. It’s full of challenges which I have to both face the reality of, but also try not to think too much about.

“Worry does not empty tomorrow of it’s sorrow, it empties today of it’s strength.”

– Corrie ten Boom

So I will choose to keep on living life – for now WITH my spinal CSF leak and the arachnoiditis. And if I am to keep on living, I will try and find ways to keep on finding that:

Joy in living, despite the awful symptoms.
Contentment, despite the loss.
Peace, despite the constant noise of the pain.
And always pressing deeper into that Love, both spiritually & relationally that sustains us and gives us the strength and purpose to keep on going.

Even when some days are just really really hard.

“There is so much rejection, pain and woundedness among us, but once you choose to claim the joy hidden in the midst of all suffering, life becomes celebration. Joy never denies sadness, but transforms it to fertile soil for more joy.”

– Henri Nouwen

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Here is my new summary video of my whole medical journey as well as footage of my January/ February 2021 adhesive arachnoiditis relapse/ flare and treatment with IV Steroids.

UK CSF LEAK CHARITY: https://www.csfleak.info/
US CSF LEAK CHARITY: https://spinalcsfleak.org/
SPINAL CSF LEAKS: Clinical Presentation, Investigation Findings, and Treatment Outcomes of Spontaneous Intracranial Hypotension Syndrome (NHNN authors): https://jamanetwork.com/journals/jamaneurology/fullarticle/2774171
Please see this May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition.
ARACHNOIDITIS: ‘Arachnoiditis – Taming the Most Painful Pain’ Dr Forest Tennant video https://youtu.be/VGuS1iTuhLo​​
ARACHNOIDITIS: Suspecting & Diagnosing Arachnoiditis (J. Antonio Aldrete) https://www.practicalpainmanagement.com/pain/spine/suspecting-diagnosing-arachnoiditis

CHRISTMAS AND NEW YEAR GREETINGS

I wanted to take a minute to send so much love and Christmas greetings and blessings. I also send you hope for some good times, better moments and more healing in 2024!

Here is a one minute YouTube short video to say it to you in person. I really do appreciate everyone who has followed my story in any way shape or form.

I am sorry I am not always good at updating this blog these days – it is simply due to my limited capacity and need to prioritise other things. But I am sure I will find something more to add to this in 2024…

ARACHNOIDITIS RELAPSE AUGUST 2023 WITH ACUTE LOW PRESSURE HEADACHE FLARE – What is the connection?

“Perseverance is rooted in hope. We persevere when we believe that what awaits us is worth the fight.” – Sarah Walton

Sadly, following just over a year with much more ‘stable baseline’ arachnoiditis/ CSF leak symptoms…

I finally succumbed to a new flare.

Another relapse.

And it was again … BAD.

Bad enough that a 10 day course of 40mg prednisolone (oral steroid) hardly touched it….Took the edge off maybe… But certainly couldn’t stop it!

That is the power of my arachnoiditis flares. Once established – they seem untouchable to halt.

… Until we use the IV Methylprednisolone 1g a day x3.

Until we hit the inflammation HARD & FAST.

That’s the only thing that seems to stop it in its tracks and subsequently reverse the relapse process… back into recovery.

I have again documented this flare with a new YouTube video (see below) made post IV treatment. But it includes some footage from the flare itself.

I make these videos to raise awareness, to educate, to continue to tell my story, inform others of my progress and also to process my own trauma.

Because it’s always traumatic.

To feel that abhorrently unwell. To feel so vulnerable and out of control. To be brutally reminded of the nightmare of dozens of previous relapses … and especially the trauma of the memories of the ones from before…

… from before we knew about the central nervous system inflammation. About the Arachnoiditis that seems to have been there from the start.

Hiding in plain sight for many years.

Before we understood – about the arachnoiditis inflammation and the way these flares always seems to take me right back into my acute low pressure/ spinal CSF leak symptoms.

Before we understood ALL that … I just had to endure, hold on and attempt not to deeply despair at the horrendous symptoms in my whole brain, spine, nervous system and whole body. That take me over and force me back to bed. Pretty much all day every day. And back then we didn’t really know how best to treat it. So I would often be like that for months.

It is easier now.

You see I have a ‘plan’.

The support of two great neurologists at two NHS trusts who work together to ensure I get access to the best treatment as fast as we can.

Also the oral prednisolone 40mg DID help! They stopped terrible symptoms getting totally and utterly unbearable with ‘relapse lightening speed’. But it couldn’t stop it. And the day I did stop it to have the IV later on. My symptoms crashed in super quick time.

RELAPSE TRIGGERS

The relapse started after a mix of long car journeys to see family across the U.K. Then on top of that walking into a door frame, bashing my knee HARD and jolting my spine. Thankfully I happened to have a follow up telephone appointment with my CSF leak specialist neurologist the day things really took a turn for the worse – so that really was helpful and another undeniable moment of divine providence I am so grateful for. So he recommended we ask my local Neurologist to arrange the IV. As is the arrangement. As is my medical protocol already established over the past 3 years.

This is my 4th IV in 3 years since I was diagnosed with arachnoiditis. Although in reality it’s always been there since my fall from a ladder in January 2015. That’s what my MRI’s show from March 2015 and that’s the story my symptoms tell me.

It’s always been the same story. From day 1 until now. The same pattern of the initial illness to every relapse ever since. Although my lumbar/ sacral/ leg/ feet/ bladder symptoms have got worse over the years too.

I had the IVs Methylprednisolone 1g Thursday 24th – Saturday 26th August 2023 on GPAU (General Practice Assessment Unit) at my local hospital.

And I am thankful to report that I am now doing a lot better.

It normally takes a couple of weeks to truly get back to ‘my normal baseline’ symptoms. And today as I am writing this we are two weeks post start of the IV. Nearly 4 weeks since this all started. I have just finished the prednisolone taper from 30mg down to 5mg and have just returned to 5mg every other day. Today is my first steroid free day in about 3 1/2 weeks. Although I have taken 75mg diclofenac today to cover me as I try and phase out the steroids back to my normal 5mg every other day. I have also recently returned to my normal 4.5ml of LDN. (Low Dose Naltrexone). (Just to note I also have had to use Zopiclone (sleeping tablet) 7.5mg at night when on higher dose steroids. Although my sleep is now improving again too).

I am finally beginning to feel like ‘my normal’ is pretty much back – give or take a slightly more spacey head at times. But that is also improving each day.

I am back to walking over 10k steps a day and doing lots around the house to keep me moving about. I am also slowly introducing more going out a bit further and will start driving short distances again soon.

So it’s good news.

It came.

It took me down.

We fought back.

We conquered.

I am recovering.

“Endurance is not just the ability to bear a hard thing, but to turn it into glory” – Philip Yancey

For all this I am extremely thankful. To have diagnosis’. (Arachnoiditis & a Spinal CSF leak). To have neurology support at two hospitals. To have a treatment plan that works. To have GP’s who understand.

It all helps so much. The major battles are already fought and won. I have my treatment plan and supportive doctors in my corner. But in reality there are always many small battles along the way. Making lots of calls, sending lots of emails, following up and explaining things again and again. Reminding medical staff I have to lie down as it can’t sit comfortably and can’t be upright at all early on in a flare. Lying down in the car to get to hospital as I cannot tolerate sitting up. Lying down in waiting rooms – hoping for enough chairs together that are free. Otherwise we carry a yoga mat for me to lie on the floor without getting completely dirty. Then there is the chaos at home of me not being able to do things … although even that is easier now my girls are 16 & 18 and can help so much more.

For all the easier things about my story I know I am blessed. I am one of the fortunate ones. Because this level of openminded medical support can be unheard of in the lives of people with suspected or actual arachnoiditis or AA (adhesive arachnoiditis). Still my doctors are all learning with me. But as we learn together the support gets more solid, more understanding. Which really does help counteract the trauma of many years of ‘doctors not understanding’ (as I wrote about so vividly here after counselling.)

So that is why I continue to share my story. I don’t take my privilege for granted: I try to raise awareness. To educate doctors, patients and family and friends. To connect with you in your immense struggle, confusion & despair. To show you ways and treatments that ‘might’ help you too – if you can find the right doctors to help you. To implore you to just keep ‘holding on’ … for years if that’s what it takes (like in my case)… because things can still get better in the end. There is always hope.

Everything I discuss in my videos is based on personal experience, years of symptom observations, plus my own research and listening to others stories. My experiences are unique and thus uniquely managed by my two neurology teams and two different Midlands UK NHS hospitals. So I cannot comment or offer any medical explanations, advice or diagnosis to others. I only share my own story in the hope it may help others on their unique journeys to more answers. I can only answer your questions according to my own limited experiences and the research I have done.

But from what some of you do tell me – sharing my story can help right? Just to know that somebody – somewhere – sometimes across vast oceans ‘gets it’. That they understand your deepest struggle, your most excruciating pain. The daily overwhelming choice to try and keep on finding ways to live despite the constant trauma, questions, confusion, misunderstandings and the deepest of pains.

So today I write to remind you that I really do understand. But these days – more than ever – 8 1/2 years on. I am learning to find a way through it – dare I say – to even THRIVE.

For these reasons my videos and articles are all fully public and can be shared with anyone, by anyone, on any platform. I also write to make translation easier because I know many non-English speakers are keen to follow my story too which is harder with the videos.

So here it is – here is my new video, I have included a content summary below so that people can more easily skip through and find the parts they are interested in.

WHY DO MY LOW PRESSURE / SPINAL CSF LEAK SYMPTOMS GET SO MUCH WORSE DURING MY ARACHNOIDITIS FLARES?

The video documents my recent arachnoiditis flare in August 2023. During this video I also consider the question as to why my low pressure headache/ spinal csf leak symptoms get equally acute during the flare. How does the increase in the inflammation and the physiological mechanisms at play cause me to revert to such distinct Spinal csf leak symptoms? As has always been the case in my medical history over the past 8 1/2 years since a ladder fall in January 2015.

In it I present some theories of my own as to why this happens so radically including:

• I leak more due to higher pressure from inflammation
• I seep more from the adhesive area or via my compromised Dura in that area.
• The inflammation blocks my spinal fluid flow causing radical changes in ICP.
• Or the one I discuss most in this video: that the inflammation pulls at my spinal cord – especially if the more adhesive area is trying to adhere further. Subsequently, bringing an increased ‘tethering sensation’ to my spine. Pulling my brain stem to create that ‘brain sag’ affect – the feeling of ‘my skull being pulled into my neck’. But then also ‘my sacrum being pulled into my lumbar spine’. Could it be that this process then blocks flow too? Causing very real sensation of my spine being tightened and clamped at my neck and sacrum which further supports this theory. Also interestingly I had some people who had previously had surgery for ‘tethered cord syndrome’ comment on one of my ‘bizzare symptoms’ videos telling me that my symptoms sounded like I had a tethered spinal cord. To which I replied – that would make sense if I have AA. Which everything points to me having – at least mildly.

But they are all just ‘theory’ because not enough research has been done. Not enough patients have been studied to really know. Although the more years that go on … the more I realise there is a lot of ‘medicine’ that is about hypotheses and theory. Although then there is the force of science that wants that evidence and proof to back it up.

But I guess that there is a sense in which – I am the evidence. My medical history, scans, test data and response to treatment are all part of ‘the science of my story’. Even if I may be a bit of an anomaly.

Please do comment, reply & let me know if you have any similar experiences – especially if you have both arachnoiditis / AA as well as a spinal CSF leak. Do you find your low pressure / spinal CSF leak symptoms get increasingly more acute when your arachnoiditis is flaring? Do steroids or anti-inflammatories help you too with all your symptoms?

The more we talk and discuss – the stronger our theories can become. So it helps me to hear your stories – as much as your hearing mind hopefully helps you.

• Content Summary so video can be skimmed through.
• 0:12 Relapse Intro
• 1:06 Post flare recap
• 1:52 WHY DO MY SPINAL CSF LEAK/ LOW PRESSURE SYMPTOMS
• GET SO MUCH WORSE DURING MY ARACHNOIDITIS RELAPSES?
• 2:00 Low pressure/ spinal CSF leak symptoms
• 3:48 Explaining my acute low pressure symptoms during relapse
• 5:50 Taking 40mg oral prednisolone (steroid)
• 6:03 My legs are not working properly
• 6:50 Relapse cause/ triggers: car travel then jolting spine
• 11:38 Follow up call with Neurologist
• 13:40 IV Methylprednisolone 1g IV x3 days on GPAU
• 14:40 Do high dose steroids increase ICP?
• 16:40 2 week prednisolone taper from 30mg to 5mg every other day normal dose
• 18:42 Can you relate? Do you get similar symptoms? Please do comment or reply.

Please remember that all videos and articles can be shared with anyone, by anyone, on any platform. As they are all in public realm.

So this is where I say ‘goodbye for now’. I am sorry I don’t update my blogs and videos as much as I used to. But to be honest I often just don’t have the time or energy. I like to do this. I like my story having a wider purpose. But it is also a challenge to achieve amidst even my mildest daily symptoms. So forgive me when I don’t write or make videos for a while. It’s normally because I am just ‘trying to find ways to embrace the life I have.’ And thrive as much as I can within all the restrictions, pain, limitations and debilitation.

But I do want to end by saying…

THANK YOU!

Thank you for listening. Thank you for taking the time to enter into my world for a moment. Thank you for your grace and kindness in bearing with my ponderings, wrestling’s and many questions.

You are appreciated. You are valued. And you are loved.

“When we know we are loved we find it easy to love other people” John Sentamu

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Please do make comments or ask questions on YouTube, here, my social media pages or on Facebook group pages and I will try to reply when I can

For the full summary of my medical history including ladder fall in January 2015, spinal CSF leak diagnosis and footage of my January 2021 arachnoiditis flare see this 5 min video:

ARACHNOIDITIS RESOURCES

‘Arachnoiditis – Taming the Most Painful Pain’ Dr Forest Tennant video https://youtu.be/VGuS1iTuhLo and ‘Arachnoiditis No Longer A Rare Disease’ https://www.practicalpainmanagement.com/pain/spine/adhesive-arachnoiditis-no-longer-rare-disease

Suspecting & Diagnosing Arachnoiditis (J. Antonio Aldrete) https://www.practicalpainmanagement.com/suspecting-diagnosing-arachnoiditis

IV STEROID TREATMENT PAPERS: Dr J. Antonio Aldrete also co-authored a comprehensive medical book called ‘ARACHNOIDITIS THE EVIDENCE REVEALED’ with a whole chapter (51) dedicated to the study of using IV Methylprednisolone in the acute stages of Arachnoiditis/ Adhesive Arachnoiditis to prevent further progression and damage. Another medical paper supporting the use of steroids in treating early stage arachnoiditis: Immunotherapies in chronic adhesive arachnoiditis – A case series and literature review https://www.sciencedirect.com/science/article/pii/S2405650221000423?fbclid=IwAR0lAuYagMPknv0pATPQ1dvOt_b0VlIEn6yxJx-DJ9o22EDb45LHJYuH9mg And another case where IV methylprednisolone was successfully used: Idiopathic Arachnoiditis of the Cauda Equina: A Case Report from Tanzania https://www.karger.com/Article/FullText/518379?fbclid=IwAR32EN7tPQD3iKOO9I8bI05ylXvuy-yjLsDyVlmESVJsW63y_j1IqAuFxDo

SPINAL CSF LEAK INFO: Here is a brilliant 2 min animation about Spinal CSF leaks. For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org. Please see this May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition.

24 BIZZARE ARACHNOIDITIS & CSF PRESSURE SYMPTOMS

In this new blog post I want to introduce you to two of my videos, made in the past year, that attempt to describe some of my stranger or more ‘bizarre’ symptoms and how I manage them. The videos mention 12 symptoms each. So I have titled this blog post ’24 bizarre symptoms’ although there is certainly some overlap in some of the ones mentioned. This is by no means a definitive list – simply an attempt to list around 12 at a time to try and connect with others suffering and raise more awareness of these conditions.

Some of the symptoms are also more ‘bizarre’ than others.

Although they are all my normality.

I have been diagnosed with arachnoiditis (mildly adhesive) and a spinal CSF leak. I continue under the care of two UK NHS neurologists at two midlands NHS hospitals. They work together to oversee my care and my ongoing treatment with oral and IV steroids as talked about in previous articles.

People with spinal CSF leaks, arachnoiditis, AA (adhesive arachnoiditis), tarlov cysts and other similar conditions regularly comment on my videos on YouTube or via my social media posts on the videos. When people have watched these two symptom videos, they often express that they experience all these symptoms, or many of them, and appreciate me trying to explain what they often find so hard to put into words.

That is the privilege of being something of a public communicator and having the ability and capacity to both write and make videos. I have thus found an opportunity to be a public voice for people who often feel like they have no, or a very little, voice.

It actually also encourages me when people comment or reply because we can then share those ‘me too’ moments. There is always a deeper community discovered in the mutual understanding and experience.

We feel less alone when we meet others like us.

I am also well aware that I am in the very privileged position of currently not being so severe as others symptomatically. I regularly hear from people who are mainly stuck in bed or who can hardly walk at all – due to a leak or AA. I never take for granted how functional I currently am – when not in a flare/ relapse. However, I have also certainly known debilitation that has left me bedridden for months at a time. I have also known excruciating 24/7 pain – not only when upright – but all day and all night due to the arachnoiditis flaring on top of a leak and ongoing CSF pressure and flow issues.

So although my case may currently seem comparatively mild compared to others who can only dream of being upright most of the day or walk 10k steps each day. I have certainly tasted of much worse than this, and still occasionally end up back there when I do flare/ relapse. And who knows where things will progress in the future…

… and in that regard I have to train my mind not to dwell on the fears of the unseen and the unknowns of the future. There is always hope – and we never know what medical breakthroughs might one day arise.

“Today is mine. Tomorrow is none of my business. If I peer anxiously into the fog of the future, I will strain my spiritual eyes so that I will not see clearly what is required of me now.”

– Elisabeth Elliott

I do remain exceedingly grateful that we have found a way to manage and treat the arachnoiditis, in particular, that has improved my quality of life so much and also is hopefully stopping a much quicker progression into more severe AA.

So I again write this article with compassion, empathy, love and gratitude. For where I am at – and the privileged position I am in – yet also mindful of the even worse acute pain some of you are living with each and every day. I do understand and relate in so many ways. Even when our stories might be quite different.

These symptom lists should show – although I am comparatively functional – I am still immensely restricted. Nearly every part of my life is impacted by the need to manage this condition – to stop the pain, immense challenges and restrictions overwhelming me.

There is a sense in which this ‘symptom profile’ is just my daily normality. You really do just get used to it to a certain extent! However, sometimes voicing and listing them can also be liberating, in allowing my mind to recognise the immense difficulties in living this way.

Even typing this at the moment on the laptop is an endurance test…

My lumber pain is building to intolerable levels, as is my neck pain. The metaphoric clamp in my neck and sacrum is being tightened, my spine feels so ridiculously tense and pulled. My legs are getting increasingly tingly and feel weird. I am becoming more and more aware of the discomfort of my feet touching the ground (as it is still slightly easier to use the laptop standing). My head is getting increasingly full, and the tension from my neck is extending to a band like tension behind my eyes. My eyes hurt, my concentration is beginning to fail as my head feels fuller – and reality becomes more cloudy, hazy and distant. My body is also feeling increasingly overwhelmingly hot as I try and push through another sentence or two.

And I have only been standing here typing for about 20- 30 mins max.  

That’s how restrictive this is. Gone are the days of working on a computer all day or sitting down for extended times to work.

That is no longer possible for me.

So for now I will have to step back from this for a time, to move around, go for a walk… anything but endure the pain, distress and nausea I am subjecting my body to in pushing through to write for 20- 30mins.

So bye in this moment… I will be back again soon.

…………..

So 40 mins on since I wrote the above – I have moved around more again and went out for a 20-30min walk. As I left the house my head was so full and things felt more distant and intense. As I walked I felt really sleepy and was constantly yawning for about the first 10 mins and my ears, crackled and popped as my pressure attempted to equalise more. It never fully does – my head is always full of pressure to a certain extent – but after about 10-15mins I found I was yawning less and focused on walking more.

To be honest – many of my long daily walks are like taking medicine or doing physio. They are a need rather than always enjoyable. Something that needs to happen – even when much of my body would probably prefer to lie down in bed or lie on the sofa and watch TV. But I have learnt that walking is better for my body, mind and symptom management. The reality is that I could probably relax at first lying down … but the longer I do so, the more likely I will get an awful headache lying down too. Especially if I try and do anything like write on my phone, read or edit videos.

It’s the vicious circle. The constant need to change position. To move about as much as I can.

So for me – earlier in the day – the more walking the better. Because later on – I will probably just not have the energy any more. And walking when it’s dark (especially in the winter) is never so good.

It’s a challenging life. But one which I try and make the best of.

Some days I do love to walk. I am so grateful to still have that ability and for the nature, trees, sky, beauty and for those moments alone to think, pray or listen or to talk with a friend or loved one.

Other days I only do so because I know I must.

Like taking a horrible medicine or exercising when you would rather be in bed.

Because I do know it helps me – a lot. And one of my greatest desires is to help myself manage all this as much as I can.

But it IS exhausting living like this.

But so much better than the alternative – the days of being housebound and stuck in bed.

So I must remember to stay grateful for each and every step and the freedom they bring.

So there again is a written glimpse into some of the challenges I face each and every day. However, for now the time has come to move from written – to spoken words. To share my two videos on some of the multitudes of symptoms I experience daily.

What is caused directly by the arachnoiditis/ AA, what is a small leak still there, CSF flow issues or CSF pressure issues. I cannot always say for sure.

We ‘chronically ill’ spend much time deliberating, analysing and wondering what causes each and every symptom. Sometimes, over time, the picture becomes clearer – albeit still somewhat muddled.

This is my own unique experience and interpretation of the strange sensations in my broken body.

But I must add a disclaimer…

‘Who really knows’ what is what or why and which is from what?

Does it always truly matter anyway?

I have come to see and learn that this is a big part of medicine itself – hypothesis, analysis, deliberation & discovery. Sometimes the evidence does provide an explanation. Sometimes we are left with only theory and wonderings. Especially in conditions that are poorly understood, recognised or researched – like mine are.

VIDEO 1: APRIL 2022 -12 BIZARRE ARACHNOIDITIS & CSF PRESSURE SYMPTOMS – Including my Covid and holiday flight experiences

In this video I discuss twelve of my most prominent – but bizarre – daily symptoms. I also seem to suffer with some high intracranial pressure issues these days as well as possible low pressure – but it’s confusing as to which is which and after 8 years of suffering since my accident (a ladder fall). So all I am really clear on – is that my whole intracranial pressure system is completely dysfunctional and unbalanced in many ways.

I also update on my case including: Having Covid in March 2022 and flying to Mallorca (2 1/2 hr flight) for a family holiday in April 2022.

Video content Summary:

• 1:40 – Having Covid March 2022
• 4:23 – Family holiday to Mallorca Spain including flight
• 7:50 – 1.I have felt drunk for seven years
• 9:19 – 2.I usually feel weird: pressure & pain
• 10:48 – 3.Stiffness, stuckness & pulling sensation in my spine (11:48 Tarlov Cysts)
• 12:09 – 4.Sitting down aggravates all my symptoms & legs go numb
• 14:17 – 5.When I sit I am better leaning forward on hard chairs or with a wedge cushion
• 16:50 – 6.Standing in one position too long makes me feel really ill
• 18:25 – 7.I constantly feel compelled to move around
• 20:35 – 8.I get headaches & feel groggy in the nights & in the morning
• 22:09 – 9.My skin often has crawling pins & needles sensation
• 24:00 – 10.Going for a wee makes my head worse
• 25:54 – 11.My head is very hypersensitive to any ICP (Intracranial Pressure) changes
• 27:52 -12.My eyes & brain are supersensitive to lights & moving images

VIDEO 2: FEBRUARY 2023 – 12 MORE BIZARRE ARACHNOIDITIS & CSF PRESSURE SYMPTOMS: Including a case update

In this video I discuss twelve more of my most prominent – but bizarre – daily symptoms.

Video content Summary (sorry some of the numbers got mixed up):

• 2:58 – Case Update
• 5:12 – Current Meds
• 6:14 – Walking still helps
• 7:56 – 12 More Bizarre Symptoms intro
• 8:32 – 1. Hypersensitivity to stress & intense emotion
• 11:10 – 2.Feeling like I have a clamped steel rod in my spine
• 12:16 – 3.Stiffness & pulling in my neck
• 13:46 – 5.Crouching really flares my symptoms
• 16:49 – 6 Speed bumps make me feel really ill
• 18:32 – (4)Moving images makes me feel really sick
• 19:20 – 7.Hypersensitivity to noise
• 20:33 – 8.My ears regularly crackle & pop
• 21:52 – 9.Bladder urgency & retention
• 23:20 – 11.Have to carry bags into me
• 25:14 -12.Lie on my side with pillows
• 26:00 – (10)Log roll in and out of bed to protect spine

So there is another 24 of my strange – often bizarre – symptoms. Most of which have always been there the whole 8 years. Others which have developed or at least worsened over those years. It is by no means an exhaustive list. So maybe sometime I will add some more…

For instance I could mention how the sensation / neuropathy issues in my feet have gotten somewhat worse. How I can no longer tolerate walking bare foot or with just socks on around the house. How the sensation is both impaired yet also gives me differing levels of pain & discomfort. Or I could tell you about having to choose what I wear carefully. How certain clothes, fabrics or styles are hard to tolerate on my hypersensitive skin these days. Or finally I could lament the fact that my body is often hypersensitive to pain and touch. This gets acute in a flare – but to a certain extent it’s constantly there.

But for now 24 is more than enough to welcome you into my daily world.

And I will finish by asking – what about you?

Some of you have already responded and commented and I appreciate that so very much. I am always very willing to listen and learn from your own experiences too. Can you relate to my descriptions – even if your case is worse – or even milder than mine? Please do comment or reply so that we can all continue to learn together.

For together always has more strength than standing and speaking alone.

Even the weak become strong when they are united.

– Friedrich von Schiller

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Please do make comments or ask questions on YouTube, here, my social media pages or on Facebook group pages and I will try to reply when I can

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For the full summary of my medical history including ladder fall in January 2015, spinal CSF leak diagnosis and footage of my January 2021 arachnoiditis flare see this 5 min video.

ARACHNOIDITIS RESOURCES

‘Arachnoiditis – Taming the Most Painful Pain’ Dr Forest Tennant video https://youtu.be/VGuS1iTuhLo and ‘Arachnoiditis No Longer A Rare Disease’ https://www.practicalpainmanagement.com/pain/spine/adhesive-arachnoiditis-no-longer-rare-disease

The Arachnoiditis Syndrome – Dr Sarah Smith UK https://arachnoiditis.co.uk/index.php/information/medical-papers-2/124-the-arachnoiditis-syndrome-dr-sarah-smith

Suspecting & Diagnosing Arachnoiditis (J. Antonio Aldrete) https://www.practicalpainmanagement.com/suspecting-diagnosing-arachnoiditis

IV STEROID TREATMENT PAPERS: Dr J. Antonio Aldrete also co-authored a comprehensive medical book called ‘ARACHNOIDITIS THE EVIDENCE REVEALED’ with a whole chapter (51) dedicated to the study of using IV Methylprednisolone in the acute stages of Arachnoiditis/ Adhesive Arachnoiditis to prevent further progression and damage. Another medical paper supporting the use of steroids in treating early stage arachnoiditis: Immunotherapies in chronic adhesive arachnoiditis – A case series and literature review https://www.sciencedirect.com/science/article/pii/S2405650221000423?fbclid=IwAR0lAuYagMPknv0pATPQ1dvOt_b0VlIEn6yxJx-DJ9o22EDb45LHJYuH9mg And another case where IV methylprednisolone was successfully used: Idiopathic Arachnoiditis of the Cauda Equina: A Case Report from Tanzania https://www.karger.com/Article/FullText/518379?fbclid=IwAR32EN7tPQD3iKOO9I8bI05ylXvuy-yjLsDyVlmESVJsW63y_j1IqAuFxDo

ARACHNOIDITIS FLARE & IV METHYLPREDNISOLONE TREATMENT – July 2022 Video Diaries

So my body decided this last week – perhaps seeing as it’s ARACHNOIDITIS AWARENESS MONTH 2022 – to completely relapse in typically explosive fashion! The full flare burst in on Tuesday following a slow deterioration after travelling a couple of hours by car to see my specialist Spinal CSF Leak neurologist (who also leads on my Arachnoiditis care) and having a neuro examination last Friday.

The neurological examination included straight leg raises, leg strength tests, reflexes, sensation tests etc.

I wonder if my body was slightly more vulnerable because I had slightly lowered my steroids and LDN over recent weeks. I often take 10mg of prednisolone if I am going on a long car journey – but didn’t this time. I only took 5mg. Then the travelling, neurological examination then the car journey the next day (as we stayed over in a hotel to break up the journey) was the final trigger to the almighty flare.

By the Saturday morning I was already feeling worse and the car journey home harder. And then things slowly deteriorated until the full symptom explosion on Tuesday.

It was so tough to be back there again – in a massive relapse – after a much better and more stable 18 months.

I am extremely grateful for the swift response of my local neurologist who supports me with the help of my CSF leak neurologist. They are the ones who treat me locally with IV methylprednisolone. She responded the same day we reported the relapse and set in motion the previous-agreed treatment plan (3 day course methylprednisolone (steroid) 1g bag a day).

Unfortunately though, the day ward at my local hospital didn’t have any beds until the next Wednesday so we tried A&E Friday after being redirected by them if I needed more urgent care. Thankfully it was unusually quiet at 10:30am and after speedy assessment I was quickly moved to a quiet dark room on GPAU (GP ASSESSMENT UNIT) and after lots of waiting, seeing a medical doctor and neurologist and after various examinations/ blood tests I was finally given the steroids at about 7:45pm that evening. I then went back on the Saturday and Sunday for the full course – which were much quicker. Those IV’s only took about 1 hour.

I am very thankful to both my consultants, and the doctors and medical staff I saw that day, who enabled access to this level of rapid care. It is my quickest treatment and acute symptom reversal to date. What used to take many weeks or months to slowly improve (& often not fully) is now is happening in a week.

Which really is a miracle to me.

I am so pleased to report that the results of the steroid treatment were again were radical, in completely reversing and turning around the flare.

Rapid treatment of flares is the key to stop further damage (nerve clumping and adhesions) and allows me to recover more quickly as I lose less conditioning – so it’s been good to find a new possible treatment pathway IF the day ward is not able to help so quickly.

To raise awareness I have made video and photo diaries from the past week of relapse symptom progression and the impact of the IV steroids (1 gram bag of methylprednisolone x3 over 3 days). My hope is that in time more people can be diagnosed far quicker than the 5 1/2 years it took me and get access to similar treatment whilst the condition is still more able to respond.

There are of course many risks to high dose and long term steroid use especially osteoporosis, adrenal gland issues and many other things. This does mean steroid treatment is not something to be taken lightly. But in my eyes – the risks to my body of further nerve clumping and adhesions in my lumbar spine that could leave me at least partially – if not fully paralysed and in constant intractable pain and thus bed bound – is a MUCH greater risk. To my body, mental health and even an osteoporosis risk in itself if I can’t walk. So the use of steroids must be carefully managed by an experienced medical team – but if they both radically improve the AA symptoms, neuro inflammation damage, quality of life, general health and mental health long term – to me it is worth the risk.

My hope is that in time as Arachnoiditis / Adhesive Arachnoiditis is more recognised, diagnosed and researched that more medications may become available that have less risks long term. This is what has happened with other neuro inflammatory conditions like MS or other inflammatory conditions such as rheumatoid arthritis or crohn’s / colitis. But that is partly because many more people suffer from these conditions and there is much more research and clinical trials done.

The new video is a 25min video in total because it includes video and photo diaries of my whole journey from relapse explosion to post IV recovery. But the information below the video in YouTube has chapter summary’s which allows you to skip through to different parts for ease and speed. And also enables people to go back to particular parts of interest.

https://youtu.be/UV8wHX26XgQ

These are the chapter summaries with timings:

• 0:22 Day 1 of Arachnoiditis symptom explosion – back, neck, head pain, weak legs, burning feet, low pressure headache, cognitive issues
• 2:08 Day 2 of symptom explosion – spoke to neurologist who will arrange IV methylprednisolone
• 3:23 Key symptoms – Tingling, cold, burning feet. Walking getting worse, feet not working properly, trip hazard, neck burning/ stiffness
• 5:25 Day 3 of relapse – Increasing photophobia, lumbar and neck pain horrendous, pins and needles everywhere, wee makes head worse.
• 7:09 20mg prednisolone, 50mg diclofenac, 50mg pregabalin & 4.5ml LDN
• 7:25 Video of me struggling to walk
• 8:05 Twitching/ jolting/ electric shock sensation – take 2mg diazepam
• 9:36 Struggling to walk up stairs
• 10:06 Day 4 of flare – really struggling. Go to A&E and moved to GPAU.
• 11:52 First dose of 1 gram bag of IV methylprednisolone on GPAU unit at local hospital
• 12:23 Day 2 of IV steroid treatment including update on recovery morning after first lot
• 16:20 Photos of receiving second dose of IV steroids
• 16:39 Stairs walking much improved
• 16:48 Day 3 of IV steroid treatment including update on recovery morning after 2nd dose
• 18:58 Final 1 gram bag of methylprednisolone at GPAU unit
• 19:05 Final update on recovery

My hope in making and sharing these videos is that awareness is raised. That patients, their families & friends, doctors, medical staff and the general public are educated and that more people with arachnoiditis can get diagnosed and treated. Especially before the condition often becomes more untreatable as it progresses.

It took me 5 1/2 years to get diagnosed with Arachnoiditis after my initial ladder fall and spinal CSF leak onset. Because of that I already have permanent damage to my spine/ nervous system. I battle constant pain, spinal fluid flow issues, I cannot comfortably sit down any more. My neurologist still believes I probably also have the small CSF leak shown on my last full protocol spinal CSF leak MRI’s in September 2019. Which probably complicates things further. My whole Intracranial Pressure System is completely dysregulated.

And yet the Arachnoiditis is still mild enough AA that I can still respond radically to steroid treatment of the acute flares. And we can hopefully now stop more rapid progression into more debilitating AA happening soon.

So I also make videos and share my story here to give others hope. Things can improve.

Please don’t give up!

It is such a hard, deeply painful, grief full, life altering journey to go on…

But an arachnoiditis/ AA diagnosis is not the end!

We are all learning together. And in time – maybe if we all can do our bit to raise awareness. To educate. To keep on fighting even when we just want to give up. Then things just might get easier for us and those patients coming behind us in the future.

So that together we can change the outcome for at least one desperate, struggling and broken soul with – or yet to be diagnosed – with arachnoiditis/ AA.

“Those who have a ‘why’ to live, can bear with almost any ‘how.’” 

Viktor E. Frankl, “Man’s Search for Meaning”

“Perseverance is rooted in hope. We persevere when we believe that what awaits us is worth the fight.”

– Sarah Walton

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Please do make comments or ask questions on YouTube, here, my social media pages or on Facebook group pages and I will try to reply when I can

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For the full summary of my medical history including ladder fall in January 2015, spinal CSF leak diagnosis and footage of my January 2021 arachnoiditis flare see this 5 min video.

ARACHNOIDITIS RESOURCES

‘Arachnoiditis – Taming the Most Painful Pain’ Dr Forest Tennant video https://youtu.be/VGuS1iTuhLo and ‘Arachnoiditis No Longer A Rare Disease’ https://www.practicalpainmanagement.com/pain/spine/adhesive-arachnoiditis-no-longer-rare-disease

Suspecting & Diagnosing Arachnoiditis (J. Antonio Aldrete) https://www.practicalpainmanagement.com/suspecting-diagnosing-arachnoiditis

IV STEROID TREATMENT PAPERS: Dr J. Antonio Aldrete also co-authored a comprehensive medical book called ‘ARACHNOIDITIS THE EVIDENCE REVEALED’ with a whole chapter (51) dedicated to the study of using IV Methylprednisolone in the acute stages of Arachnoiditis/ Adhesive Arachnoiditis to prevent further progression and damage. Another medical paper supporting the use of steroids in treating early stage arachnoiditis: Immunotherapies in chronic adhesive arachnoiditis – A case series and literature review https://www.sciencedirect.com/science/article/pii/S2405650221000423?fbclid=IwAR0lAuYagMPknv0pATPQ1dvOt_b0VlIEn6yxJx-DJ9o22EDb45LHJYuH9mg And another case where IV methylprednisolone was successfully used: Idiopathic Arachnoiditis of the Cauda Equina: A Case Report from Tanzania https://www.karger.com/Article/FullText/518379?fbclid=IwAR32EN7tPQD3iKOO9I8bI05ylXvuy-yjLsDyVlmESVJsW63y_j1IqAuFxDo

ARACHNOIDITIS UPDATE: ONE YEAR SINCE DIAGNOSIS

A few weeks ago I decided to do a new video update on my case to mark my progress a year after I was first diagnosed with arachnoiditis, and six months since my last flare, IV steroid treatment and the start of my making videos about my case. It’s taken me a few weeks to then add to this video with this additional expanded update in writing.

Sometimes I feel like it takes ‘an essay’ to give a more substantial picture of how things are. Videos help that as I can add quite detailed explanations. However, writing can also provide a different avenue which allows further explanation and summary of how things really are.

So to start off with I wanted to share my seven minute video update, then I will expand on what I have said in that with a few more details and explanations. https://youtu.be/Qa2RwmwYTDo

As you will see – it’s very good news for me on so many levels.

Compared to how things were last year and especially around the time of the admission that prompted the diagnosis… things are substantially better in so many ways. My symptoms ‘across the board – in my head, spine & legs’ are substantially better and more controlled. I can do between 9-12 hours upright in one go and then more again after that if I lie down for 1-2 hours to rest. I walk around 7-12km a day over 2-3 long walks. My head is clearer, I do not suffer with as much fatigue or so many debilitating headaches. I have been able to travel for holiday and to visit family in the UK (although this in reality remains very hard). I can do and achieve more ‘normal life activities’ than I probably have been able to do since my accident.

However…

When you are chronically ill there are often no simple answers to explain your current experience of life. Yes I usually ‘look well’ at the moment to most outsiders. But ‘looking well’ masks a hidden reality of constantly managing what I do and can’t do. What position/ posture I can stay in, to try and get the ‘best outcome’ of symptom stability.

My daily living is dictated by constant micro & macro self-management decisions & deliberate plans to help my body utilise its abilities rather than constantly be restricted by its disabilities.

I gave up on ‘normal’ a long time ago.

Since my accident (a ladder fall) in January 2015 I have not had one day I have felt ‘normal’ … like I used to before that day I fell. A time without any neurological issues in my head & spine. I cannot even remember what ‘normal’ feels like to be honest. I watch people sitting down comfortably or relaxing on a recliner chair with their head up and think ‘how do you do that?’ It’s just so uncomfortable for me to sit or recline (unless fully flat on my side). So it’s just not relaxing! I have become used to standing, moving around, walking, being quiet, lying down. I have got somewhat used to the unnerving constant pressure and subsequent ‘dreamy/ foggy’ feeling in my head. The constant stiffness, pain, tension and pulling in my spine.

This is my ‘normal’ which is far from normal… And yet I live A LOT closer to ‘normal’ than I probably ever have done in the past six years. I have found ways and means to bring balance, symptom management & utilise my broken body to the best of its capacity.

…And that has been LIBERATING!!

I am doing well for me!

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A New Way Of Living

I have found ways of living that generally work with and around my limitations, frustrations and restrictions. It’s often a quieter way of life … a long way from the busy, outgoing, energetic, packed full life I used to live… but full of many things I love and value all the same.

Through accepting my limitations – and not trying to constantly ‘push against them’ I can often find a ‘way to make it work’ … as long as I am realistic about what my body and brain can do.

Understanding Empowers

Understanding and treating the arachnoiditis more has been revolutionary to more physical and mental stability in my life. My body & its many issues are much less of an enigma to me … we have more answers and I have learnt to ‘flow with’ the illness more rather than do things that make things worse.

The Problem With Staying in One Position

For instance… today I am typing this in my iPhone notes… and because I am standing, mainly in one position, with my neck slightly bent & arms raised to hold my phone… the pressure is building in my head, upper neck & lower spine, the pain is increasing behind my eyes, neck & lumbar spine until I start to feel like my head wants to burst, my ears need to pop and sometimes a wave of nausea begins to come. The pins and needles & numbness are also increasing in my legs … so I am feeling that normal ‘arachnoiditis agitation & restlessness’ increasing.

But these days I know the answer to help alleviate these increasing symptoms … it is to walk, to move around. To allow my spinal fluid/ circulation or whatever is hindered to flow again more freely.

Then I can come back to this task later.

I have learnt to accept that my concentration can only remain consistent in one position for so long. But if I learn to do things in shorter bursts – 20mins here – 30 mins there… with breaks to move around and maybe do some simple housework in between…

…then I will get more done.

It works for me because I mix any church admin, preparation or other work or admin in with general housework, standing gardening, cooking, shopping or sorting things to help my body through moving about again at regular intervals.

To some people it might look like anxious or restless behaviour… and I think I could be ‘seen’ like that by others before. But in reality the constant moving about is mainly a biological manifestation to stop the aggravation of increased physical symptoms and pain from staying in one position too long.

Other Symptom Aggravators

I have to manage bending, straining, raising my voice, singing, what I carry, how fast I walk, how long I sit, using the loo, how far I drive or travel as a passenger, fast moving images (even scrolling on my phone or on the computer can make me feel nauseous), loud noise and bright lights etc… all things that exacerbate my symptoms. So need careful management.

Walking is really helpful for my lumbar spine, legs and general fitness but it can at times also flare my head pressure – especially if I walk too fast, try talk a lot when I walk or have to look down because of uneven ground. They can all cause a pressure surge in my head and neck & make the dreamy/ strange equilibrium feelings even more noticeable. However; the benefits of lots of walking greatly outweigh the drawbacks and it has been liberating to be able to do so much more that I could a year a go.

Managing Stress

I also have to carefully manage stressful situations or hurrying about. It takes extremely fine balancing to keep myself calm in difficult circumstances. This is because stress, anxiety, a lot of pressure on me or the need to rush are extremely detrimental to my symptom stability. I believe that this is probably a lot to do with the strain it puts on my intracranial pressure system. My normal biological reactions are very hypersensitive compared with your average person.

Things That Improve My Symptoms

Include: Moving around as much as possible, walking a lot – long distances every day – being quiet when needed, resting lying down in the evening, eating healthily at regular intervals, taking medication, planning my day to include all these things in good balance. Symptom management is all about good planning to provide correct breaks from sitting or staying in one position for too long. And good rest lying down later in the evening.

Often by the evening my lower lumbar/ upper sacral spine pain is pretty awful – especially if I have done a lot of standing, sitting or bending. It feels a bit like someone has ‘grated’ or deeply ‘grazed’ the inside of my spine. Like when your flesh is raw – but deep inside me. Although this does always improve after an hour or so lying down in bed or on the sofa.

• 

Spinal CSF Leak Update

At the moment we do not know for sure whether my spinal CSF leak is there permanently, has fully sealed, comes and goes or possibly remains and acts as a stabiliser to my messed up intracranial pressure system. I say this because I do appear to struggle with higher intracranial pressure issues as well as low ones. Which is again typical of people with arachnoiditis & sacral Tarlov Cysts. So I have sometimes wondered whether – IF the leak is still there – whether it could possibly act like a ‘natural shunt’ that helps maintain my pressure surges. Equally, it could be that the leak isn’t permanent and it heals but can return. It really is hard to know. It was last seen on my September 2019 MRIs and I haven’t had a new full spinal MRIs at my CSF leak specialist hospital since then. However, it is clear that when my arachnoiditis symptoms do flare – when I relapse – that my ‘low pressure syndrome’ symptoms get a lot worse again.

We can only theorise as to why this is. I personally think that my CSF flow becomes impeded by the inflammation and nerve clumping because it improves so radically when I have the IV steroids… and, as my neurologist said, IV steroids will not seal a leak. So we know there has to be something else going on. It could also be that the inflammation causes an increase in intracranial pressure which causes me to leak more. But there are many unknowns. A spinal CSF leak has certainly been a big part of my story and probably the initial catalyst for my ongoing issues … but there is perhaps more to the way the whole CSF system is impeded by the arachnoiditis than we yet fully understand.

In my case, I have decided with my neurologist that it’s too risky to pursue any more investigations regarding the spinal CSF leak. Because these would include CT myelograms, epidural blood/ glue patches or surgeries which have the potential to make the arachnoiditis much worse and move it very quickly into much worse adhesive arachnoiditis. So in my case seeing that my typical low ICP symptoms have improved so radically through the use of IV steroids and my ongoing drugs protocol…. in my NHS neurologist’s words … it makes the issue as to whether I currently actually still have a CSF leak or not somewhat ‘academic’. In the end, when I had a CTM in September 2017 – I badly seizured & then after the subsequent high volume lumbar BEBP a week later I was seriously unwell for weeks to months after it. I wouldn’t want to risk that again without a critical reason.

So it is no longer a risk we are willing to take. In my own case it seems that the arachnoiditis is my bigger current problem. And thankfully when we treat the arachnoiditis EVERYTHING else improves.

Current Medication

My update video gives a summary of my current medication but here it is written down:

• 5mg prednisolone every other day (after 20mg Omeprazole to protect my stomach)
• 4.5ml LDN (Low dose Naltrexone via private prescription from Dickinson’s Chemist Glasgow) but with the awareness of my GPs and two NHS neurology teams
• Iron tablets (Ferrous Sulfate) due to low ferritin levels found after blood tests following hair loss)

Medication sometimes used for symptom flares or for long car journeys/ travelling (as discussed in my video).

• 50mg pregablin
• 2/ 2.5mg diazepam

Supplements

Turmeric/ Curcumin, B-12 & B complex, Calcium, Magnesium & Vit D, Omega 3. (Disclaimer – I do not really know which help and which don’t. I simply chose them according to my own research and in relation to the meds I take). It’s my whole medication, supplement and walking protocol that helps. I also try and eat a low carb/ low sugar and high protein (inc some meat), dairy, vegetable & fruit diet.)

Halted medication & supplements due to possibly contribution to hair loss as discussed on my video. My hair loss has much improved since coming off these and taking iron tablets.

• Diclofenac
• Pregnenalone (non- prescription supplement)

Arachnoiditis: A relapsing / Remitting illness

As it is very clear if you have followed my story long-term, my illness has always followed a clear relapsing / remitting pattern. This means is that usually around every 4 to 12 months I have an acute relapse of symptoms. This is shown in my case summary video. However, I can then go through months of doing significantly better. This is a normal pattern for people with arachnoiditis and adhesive arachnoiditis.

Since we have learnt to treat these relapses with IV steroids I have found I have recovered from the relapses in comparatively super quick time. In previous years it would take many many very long weeks and months for me to ‘somewhat recover’ from them. My last one (before last summer) was in April 2019 and I never got back to pre-relapse levels until after the diagnosis and treatment in July 2020. Since then I have also been recovering to a much much better level of symptoms stability and a much higher peak in what I can do and achieve than I have probably at any time over the past six years since my accident.

However, this does not mean when the illness is in a season of more remission that I am not unwell.

I am always unwell in one way or another. As I said above … I never feel normal.

I have obvious permanent damage to my lumbar spine (nerve clumping) and to the way my nervous & intercranial pressure systems function. However, what I wanted to demonstrate through these videos is how much better I have been since my diagnosis last summer and new treatment plan.

So for that I remain extremely grateful for all the support I’ve had from both of my NHS neurology teams, other local consultants & my local GP practice. It’s not been easy for them to navigate my illnesses when there is not a lot of up-to-date information on them and they are very unusual (and under diagnosed).

It helps patients immensely when they find doctors who are willing to listen, learn, be open minded and consider new diagnoses regarding their case. Especially when there has been so many unknowns about their constant symptoms over the years.

It is very easy for doctors to start thinking that you have a mainly psychological problem rather than a predominantly physical one when your case is full of unknowns. So to be listened to and believed by doctors AND those around you is one the most healing things to a suffering persons holistic health. One of my greatest underlying fears throughout my journey was to ‘be abandoned by medical professionals’ whilst in my greatest time of distress, pain, symptom severity and need. Mainly due to a lack of knowledge and understanding about my conditions. So to know I am under two great NHS neurology teams is very helpful to me.

I know in some ways I am still at the start of such a very long journey. Despite being 6 1/2 years into it. But over the past year I have felt that new empowerment to face both the past, present and whatever the future may bring in a more holistically healthy & supported way.

None of us knows what tomorrow will bring. But it sure does help when you have an arsenal of ‘medical and holistic weapons’ at your disposal & and a great team of supporters around you – to help you face & navigate the battles the future will inevitably bring.

“… there was no need to be ashamed of tears, for tears bore witness that a man had the greatest of courage, the courage to suffer. Only very few realised that.”

– Viktor Frankl

I pray that I … and you… may continue to have the courage to suffer well & suffer strong. Whatever that may look like long term. The past 6 years have at times been a nightmare to navigate and at my darkest times I was ready to just ‘give up’ on life itself. BUT… I do not feel like that now. So I have said it before and will say again… please never give up… because things can change and they really can get better again! And new answers to long term questions can come in very unexpected ways!!

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Here is my summary video of my whole medical journey as well as footage of my January/ February 2021 (adhesive) arachnoiditis relapse/ flare and treatment with IV Steroids. To see my daily video diaries from this time please see my YouTube channel: https://www.youtube.com/channel/UC9ZkCy9B_IpeaGrXd0CEgow

For more posts of my arachnoiditis diagnosis please see the arachnoiditis menu above.

ARACHNOIDITIS INFO: ‘Arachnoiditis – Taming the Most Painful Pain’ Dr Forest Tennant video and Suspecting & Diagnosing Arachnoiditis (J. Antonio Aldrete) and The Arachnoiditis Syndrome (Dr Sarah Smith)

A medical paper supporting the use of steroids in treating early stage arachnoiditis and in the prevention of further adhesive arachnoiditis: Immunotherapies in chronic adhesive arachnoiditis – A case series and literature review And another case where IV methlyprednisolone was successfully used: Idiopathic Arachnoiditis of the Cauda Equina: A Case Report from Tanzania

For more previous posts about my story of living with a spinal CSF Leak (from before we understood the arachnoiditis element) please look at the subject heading on the menu bar above.

SPINAL CSF LEAK INFO: Here is a brilliant 2 min animation about Spinal CSF leaks. For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.

“A Crushed Spirit” – Finding a Way Through Dark Times

“The human spirit can endure in sickness, but a crushed spirit who can bear?” ‭‭

Proverbs‬ ‭18:14‬ ‭

A few months ago I re-read this Proverb and it again spoke to my heart. Afterwards I felt a deep sense that I should make a series of videos about it. Because for me these simple words tell a profound story about sickness & suffering. They also give insight into some of my own story about the reality of enduring long term sickness.

The proverb explains that the human spirit can endure a lot of things. Throughout history, many many people have had to endure long seasons of deep suffering. In fact, things probably used to be much worse. There were less medicines, less diagnosis, less surgery, less wider help & support. So people have always – throughout history – had to endure suffering, pain, and sickness. Sometimes for their whole lives. So we know that the human spirit has shown, again and again, that it can endure a lot.

HOWEVER the proverb goes on to contrast that “a crushed spirit who can bear?”. Meaning that although humans can endure a lot – there is another state of suffering of the human spirit that can feel impossible to bear.

That is why I wanted to make these videos. To discuss what it feels like and how to endure and find a way through the seasons when our spirits feel crushed.

Another translation of this proverb says:

“A cheerful spirit gives strength even during sickness. But you can’t keep going if you have a broken spirit.””‭‭

Proverbs‬ ‭18:14‬ ‭NIRV‬‬

So here we have another meaning for crushed, which is the word broken. The same Hebrew word is also sometimes translated wounded. Basically, this tells us that a season of a ‘crushed spirit’ is characterised by feelings of:

BROKENNESS – WOUNDEDNESS – INNER PAIN – DESPAIR

If you have ever experienced a season like this, you will know exactly what I’m talking about. For some people it may be characterised as depression or extreme anxiety. For others it may well lead them into a time of suicidal ideation/ thoughts of wanting to leave – or escape – this world & all of its pain.

It is certainly a season that is very very difficult to bear and endure.

I have been there myself. I have tasted of the darkness of a season of a crushed & broken spirit. Some might call it ‘the dark night of the soul’. It’s a time when everything feels so dark and oppressive and it’s so difficult to see any light, any joy or to see a way forward. You feel stuck or lost in such a season. It can also be extremely dangerous, especially if someone is actually also feeling suicidal because there seems ‘no way out.’

This is why I made these videos and why I am writing this blog post to introduce the series. I hope that it reaches out to people who currently feel immensely lost, dark and crushed. My prayer is that it helps to bring some hope again – even if just a flicker of a flame. So that you can find a way through. I believe you can find a way through – because I did. Despite not being able to see it at the time.

In this article, I want to introduce you to a summary of each video and the main points in each one. You will discover, as I tried to explain many times, that this content has been inspired by what I have learnt on my own journey since I first started out on my journey of long-term illness (spinal CSF leak & arachnoiditis) in January 2015. Over those six years I have been through at least three intense seasons of ‘a crushed spirit’ as I write about in Breaking Through the Darkness and A Window into a Suicidal Mind.

So these are some of the ways that I have found a way through & discovered a new way of living despite the deep ongoing challenges of living with these conditions & managing them on a daily basis.

VIDEO 1 : ACKNOWLEDGMENT & VALIDATION.

In this video I talk about the importance of being honest, opening up & talking to someone about the truth of your struggles. In my experience it is vitally important to get what is locked in the darkness of your mind out into the open. When it stays stuck on the inside the chaos takes over and the mind quickly snowballs out of control. Getting our thoughts and words out of whirring around our heads can help us to bring more order to our thoughts, help us process and understand ourselves and others better.

It then helps if you can speak to someone who will validate your struggles and help support you through them.

VIDEO 2: ACCEPTANCE & LETTING GO

In this video I talk about my next step in finding more serenity: peace & calmness. That is leaning to ‘accept the things I cannot change’ but also courageously ‘changing what I can.’ This can often include going through painful season of grieving & letting go of who you once were or your dreams for the future. I also talk about learning to live more in the present. Which doesn’t mean we don’t face, process and find healing from yesterday’s trauma. But simply means that we choose not to get stuck there. I also talk about having hope for the future whilst not getting lost in its never ending what if’s.

VIDEO 3: CALMING THE MIND

I start off by honestly talking about my experiences of my mind feeling totally out of control. I remind us that we may sometimes need professional help from doctors etc before we can move out of such an intense season. I then go on to share about these main points:

1. Getting what you are thinking out in the open. A mind where thoughts get trapped can quickly turn very dark. It’s important to share how we are feeling honestly with others.
2. Protecting your mind – being careful with what you read/ watch/ listen to/ who to talk to. Guard what you feed your mind with.
3. Thought replacement (not denial) filling your mind with better thoughts. For me this includes bombarding/ renewing the mind: Listening to and reading things that encourage and inspire you. Love was also something I would try and focus on and was a real anchor for me.
4. Gratitude: Focusing on what I do have rather than on what I don’t.

VIDEO 4: FINDING NEW PURPOSE – Purpose in Pain

“As my sufferings mounted I soon realized that there were two ways in which I could respond to my situation — either to react with bitterness or seek to transform the suffering into a creative force. I decided to follow the latter course.”

Martin Luther King, Jr

1. Transform suffering into a creative force for good. Our own experiences put us in the privileged position of being able to feel more empathy & connection. It also puts us in a more experienced place to provide advocacy & fight for justice for others (as well as ourselves). This can include educating others about these illnesses & raising awareness about these conditions.
2. I am not what I do: Establishing a new identity. This will include the grieving of letting go of who we once were so that we can learn to discover new purpose and achievement in the small things. I wrote a whole blog article about this a couple of years ago titled: What is my Purpose: Do Small Things with Great Love. In it I wrote about how I was inspired by God to find purpose by daily asking the question: “Who can I show love to today?”
3. Discovering a new way of living – Finding what we can do despite all of our restrictions. This can include doing small loving things. It could include spending time with others at home, calling them, writing or sending a message. We can often find more purpose in thinking about others rather than just being consumed by ourselves.
4. Bearing suffering as a source of achievement & setting an example to others. I read Viktor Frankl’s ‘Man’s Search for Meaning,’ a few years ago about how he and others endured the desperate suffering of the concentration camp by discovering a higher purpose.

“…the way they bore their suffering was a genuine inner achievement. It is this spiritual freedom— which cannot be taken away—that makes life meaningful and purposeful.”

Victor Frankl

This can also include a realisation that us finding a way through can be so significant for those coming behind us on these journeys. Some of those people could actually be your own children, your family or friends in the future.

My prayer for you is that these videos provide some inspiration to help you endure – and hopefully find a way through – your own season of ‘a crushed spirit’. Or perhaps instead they might help to educate you to learn how better to support loved ones who are going through immensely difficult seasons of suffering in many different ways.

We all at times need others to help us come through these darker & more desolate seasons. I truly believe that we are not meant to face these things alone.

“Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. But someone who falls alone is in real trouble.”

Ecclesiastes‬ ‭4:9-10‬ ‭

So most of all today I want you to know that you are not alone. I have been there myself and it was the hardest and most painful thing I have ever had to face and come through. But I can tell you:

THINGS CAN GET BETTER AGAIN!

So never give up hope – clutch onto it, even if only by your fingernails – and do what you have to to make sure you can stay holding on. Because I do believe one day you will look back and be glad that you did. And maybe – just maybe – your own story of overcoming can then be a guiding light to others. To help them find their own pathway out of that crushing, broken & wounded place. Into the calmer & greener pastures of more holistic wholeness & deeper rest for your soul. Despite your challenging circumstances.

“O Lord… You know me more deeply and fully than I know myself.  You love me with a greater love than I can love myself. You even offer me more than I can desire… Take my tired body, my confused mind, and my restless soul into your arms and give me rest, simple quiet rest.”

Henri Nouwen

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To understand more about my medical case & story please see my new summary video of my whole medical journey please see this video.

ARACHNOIDITIS AND A SPINAL CSF LEAK: FINDING HOPE ON THE JOURNEY

“Hope is being able to see that there is light despite all of the darkness.”

Desmond Tutu

Today I want to write about HOPE, because hope is one of the strongest forces that can guide us through immensely dark seasons. Love is always the power that truly drives all I do. But hope brings energy to keep on going even when its presence is only the flicker of a flame in the darkest of nights.

”It’s always something, to know you’ve done the most you could. But, don’t leave off hoping, or it’s of no use doing anything. Hope, hope to the last.”

Charles Dickens

Today I am writing to remind you & myself that hope always lives & always remains even when everything appears hopeless. At those times we can often only see unending disaster & pain. Which can feel completely overwhelming to endure. But when we find hope we discover little rays of light that begin to glimmer & shine in the midst of the darkness.

So today I hope you will join with me and choose to HOPE again. In whatever area of life feels hopeless to you at the moment – I pray that you will find the energy to...

Hope, hope to the last.

Six Years of struggle

It’s six years ago this week that I fell from a small step ladder whilst painting & my life took what seemed like a major detour into a long term neurological nightmare. In early 2015 I was diagnosed with a concussion, then post-concussion syndrome, then a spinal CSF leak/ low pressure headaches. However, it wasn’t until the summer of 2020 that I was also diagnosed with arachnoiditis during one of my worst flares/ relapses I have ever had – as I wrote about in ‘Butterflies in the Dirt & A New Diagnosis.‘

This is my ongoing story since that time. My real life story that reminds us that sometimes hope surprises us when we chose to stay the course. Sometimes it turns things around in ways we never imagined or expected. If we will just hold on hope can bring better days again.

Summary of My Ongoing Progress

In general, it’s been mainly good news regarding ongoing progress in my recovery since the new (but old) diagnosis of chronic arachnoiditis. There have been some great results over time from my new ongoing treatment protocol to reduce spinal canal nerve/ arachnoid inflammation & help to ease the pain of the damage already done. This includes various medications and a personal physio plan of continuing to walk a few miles a day over 2-4 separate walks and gently stretching my spine regularly.

Successful treatment has meant that I am now managing to be upright and do things for stretches of on average 10-12 hours at a time before I need to lie down to rest. I can then get up and do even more after 1-2 hours rest.

Which is massive progress because during the year following April 2019 (my last bad relapse/ flare) and my hospital admission after actuely relapsing in July 2020 – I could only manage a maximum of 4 hours upright in one go – normally only 2-3 hours max. I then needed at least 2 hours lying down flat before getting up for maybe 2 hours again, and that was how my whole day went! So all the very high levels pain and debilitating head pressure issues are much improved since I had the IV steroids (methlyprednisolone) in hospital and then continued under an arachnoiditis treatment protocol. My walking is also much stronger and generally good and my mental clarity much improved so I can do a lot more in the day at home & for our church as well as maintain a helpful walking routine. 

Combination of Medications that Help

I continue to take 5mg prednisolone (steroid) every other day and 75mg diclofenac (anti-inflammatory that crosses the blood-brain barrier into the spinal canal) the day in between. I also take 4.5ml a day of LDN (Low Dose Naltrexone) as recommended by a US specialist & other arachnoiditis suffers. (This is not available on the NHS for arachnoiditis but prescribed & purchased privately from a registered LDN trust clinic. Although my GP & Neurologist have been informed I am taking it). I also take Omeprozole 20mg to protect my stomach and some other supplements including Pregnenalone to help nerve regeneration, Turmeric capsules for inflammation, Omega 3, calcium to protect my bones, vitamin B complex, magnesium & vitamin D. 

Intracranial Pressure Headache Improvement

Interestingly, what we previously assumed were classic low pressure/ spinal CSF leak positional symptoms have greatly improved too with the treatment. Which suggests the arachnoiditis inflammation was probably more of a problem on that level than we all previously realised. Which is perhaps good news for other patients that might improve on medication and with more walking and gentle stretching too. IF they could have an arachnoiditis/ spinal canal inflammation element to their ongoing symptoms.

Much Less Debilitated

The main positive thing that has changed since the new diagnosis and treatment is that I am currently much less debilitated and do not need to lie down much at all. I can also manage a lot of the pain & symptoms better – by keeping moving, regular long walks, lying down when the pain and head pressure gets too much, being quiet for a bit… and in the meantime I can do & achieve a lot more as I said above, especially as my mental clarity is much better than it was.

Summary of Recent Improvements

So the never-ending battle continues but 2020 brought new gains that I never imagined could come without more invasive procedures. That experience this year has been something of a miracle in our lives. My husband feels that I am currently the best I have been in the whole nearly 6 years… and I would probably agree with him in many ways. Although there are elements of the lower spinal pain and stiffness that are perhaps worse than other times on my journey.

The Freedom Found in a New Perspective

I think understanding the new diagnosis helps a lot too with management and mentally/ psychologically dealing with it all. It really has been very liberating to understand some more of my strange symptoms & behaviour over the past six years better in hindsight. This is why seeking out more answers can be so helpful to patients like me. Especially those with rare conditions – because it helps you to understand yourself better & gives more explanations for why you sometimes act and respond in the ways that you do. Which is so helpful for your holistic health.

I really do believe in cases of rare illnesses that there needs to be more doctor & patient partnership in understanding new diagnosis. Doctors often do not have the time to fully research and understand more unusual conditions. But if patients and doctors can choose to more humbly learn together then that can help everyone. This is especially true in our newer age of the internet and online support groups. Patients often have the time to research, learn & explore things doctors just don’t have the time for when they meet very few patients with those conditions. This subsequently means that listening doctors can then help a patient understand it all better too, because patients often lack the wider knowledge of medical complexities that doctors are much better placed to help them understand.

In my own story I am still immensely grateful for every doctor who has had the humility to patiently listen carefully and to think outside of ‘normal boxes’ to help very unique patients like me hopefully discover more answers to unique questions about their medical conditions. Those doctors are very precious to us, especially when they help us over the long term so get to know you a bit more personally too.

Radiological Evidence of Arachnoiditis

We have at least made some progress on this level since my last blog article too. My scans have been looked at by a few different doctors now including neuroradiologists, neurologists, a neurosurgeon & an arachnoiditis specialist. The conclusions coming from all avenues is that there are various ‘suggestive features’ of arachnoiditis as well as some possible mildly Adhesive Arachnoiditis (AA) elements on my MRIs. This includes my lumbar spinal nerves being situated more towards the side and back of my spinal canal (first seen in retrospect on my first March 2015 MRIs which would support my theory that a biological predisposition as well as the fall and leak were the trigger – because those scans were done before I had had any spinal procedures). As well as some possible areas of mild clumping & nerve adhesions forming & some inflammation of the cauda equina nerve roots.

This is all actually all very in line with a diagnosis of chronic arachnoiditis. It is usually a clinical diagnosis based mainly on symptoms, but over time people will often display suggestive features of spinal nerve/ nerve root inflammation, swelling and positional shifting, which may also cause spinal cysts forming (incl. tarlov, arachnoid or similar cysts – as I have). Patients may also begin to show some suggestive, possible or probable mild nerve root clumping and adhesions evident on their MRIs etc.

Clinical Rather than Radiological Diagnosis

It has been reported to me that I have enough suggestive features of all of these elements to help support the clinical diagnosis of arachnoiditis. Although not enough to support a radiological diagnosis of adhesive arachnoiditis or cauda equina inflammatory disorder.

These findings are also in line with my own experiences of treatment. I had previously read that the steroid & anti-inflammatory meds will only really work on those in earlier stages of illness progression. So my radical response to both the IV steroids given in hospital in July/ August 2020 (500mg IV methlypredisolone a day over 5 days), the subsequent steroid taper and taking anti-inflammatories, in addition to lots of walking & some gentle stretching would support the theory that the arachnoiditis is present and potentially dangerous to me, but it has thankfully not yet advanced to a more severe permanent type of adhesive arachnoiditis.

This supports my theory that we may well have thankfully stopped a more ‘adhesive episode’ taking hold this summer. I really was extremely unwell and in unimaginable levels of pain in my lumbar & sacral spine and legs. Which without treatment could have well done more permanent damage to my spinal nerves – had we not halted its progression through aggressive treatment.

Arachnoiditis and especially AA can progress very quickly when it severely flares. This is why it’s of paramount importance that people are diagnosed & treated via a clinical diagnosis before it is so serious that it is more evident on MRIs.

Treatment will always work best BEFORE the damage has become permanent & radical enough to clearly show on scans. Specialists also tell us that scan evidence does not always correspond with symptom severity anyway. As with a lot of other conditions like spinal CSF leaks.

So the earlier it is treated the better. Ongoing treatment can also help to halt progression through flares. Which is of great value to me and other sufferers of this awful misunderstood condition. Knowing how to treat it can potentially stop devastating, irreversible damage to people’s spines and whole nervous systems.

ONGOING SYMPTOMS

Despite all the improvements – for which I am incredibly thankful – the reality is also that I believe I still have permanent damage to my spine from the arachnoiditis/ leak – because chronic pain is a normal significant daily part of my life. It is just much more contained than it used to be. This again would align with what is being seen on my MRIs.

CHRONIC NEURO PAIN IN MY SPINE & HEAD

It often feels like a ‘carpet burn’ sensation – like when the top layer of skin has been gashed off – but deep in my lumbar/ sacral spine and upper neck in particular. Or definite nerve pain and pressure flares in my spine & head. Sometimes that builds to more pin’s sticking into me/ stabbing pain. It also means my spine is very stiff which also leads to a lot of leg stiffness & leg pain too. Although lots of walking helps this. Also various movements such as bending, lifting, twisting, straining make all this worse.

PINS & NEEDLES

I also get regular intermittent pins and needles/ buzzing in & all over my legs and feet & sometimes in my hands and other places. I understand what people mean by saying it feels like ‘bugs crawling on you or under your skin’ (paraesthesia) but to me it’s distinctly pins & needles – but it’s like a buzzing that pulsates and moves about on the inside of my legs and all over the surface of my skin. Thankfully it has improved a lot on how it was during my last ‘flare’. These days it’s more annoying than debilitating and thankfully my feet no longer ‘burn’ like they did in the summer.

I HAVE TO KEEP MOVING: ‘RESTLESSNESS’

A key ongoing symptom feature for me (that I have heard is very typical of arachnoiditis) is that remaining sitting and standing in one position for too long exacerbates my all my symptoms, including spinal & head pain, leg stiffness, pins & needles and the feeling of pressure in the back of my head, whole head and upper neck which leads to more fogginess and sometimes even very bad nausea or hot flushes. I have often recently wondered if this is partly a CSF flow issue – as once I start moving around again or walking – it improves. The sensation is that my intracranial pressure builds in my upper neck & whole head – but it improves through gentle movement. Even lying down for a while can cause this to happen. The minute I get up my legs are all stiff and weak and my ears pop from the pressure changes.

What this means is that I can begin to feel very agitated and distracted if I have to stay in one position for a long time. This could be read by others to be an anxiety issue or simply a deep restlessness. But I now know it’s mainly simply a typical symptom of arachnoiditis, due to build up of pain and discomfort to high levels and the body’s natural reactions to that pain and discomfort in my spine, legs & head. As the video explains well.

CSF FLOW & PRESSURE ISSUES

This would tie in with various arachnoiditis specialist’s theories about CSF flow issues and high intracranial pressure problems related to arachnoiditis. On that level I have wondered if it’s possible that the small leak that has been identified in my ventral cervical (in my neck) spine by my NHS Intracranial Pressure MDT could possibly help regulate my pressure rather than distinctly making things worse and causing typical low pressure symptoms. Which I guess could tie into my cranial scans never actually showing low pressure/ SIH.

It may also explain some of my confusing symptoms that at times over the past 6 years have completely baffled neurologists as to whether it was low pressure, high pressure or another headache type or combination. I do often wake up with a headache or at least a ‘pressure filled head’- in the night or early in the morning and I especially struggle with very weak & stiff legs and a ‘full head’ if I have to get up in the night or early morning for the loo.

Although the CSF flow and pressure theories are mainly based on my own observations of my symptoms – I don’t really know the truth of it all of course. I have come to believe it’s all FAR more complex than my doctors & I perhaps previously realised regarding CSF / ICP / arachnoiditis links. Which again would make much more sense of my own medical journey over the past six years. Arachnoiditis is known to both sometimes increase intracranial pressure, but is also known to cause you to leak or seep spinal fluid too. So that again explains more about why my intracranial pressure dynamics are often all over the place & may well continue to be pretty messed up long term. Which would also tie into my general hypersensitivity to any pressure changes. Although again all these things have currently improved to less debilitating levels since treating the arachnoiditis which shows how interlinked it all is with the inflammation as well.

STRUGGLES WITH SITTING DOWN

Thankfully I can sit for much longer than I could – but only either with a very straight spine or leaning slightly forward. Although it is never a comfortable position for me and will make my head and spine pain & pins & needles worse especially after a 30mins to one hour or so. I can also feel very sleepy and nauseous after a while sitting which can makes me yawn obsessively (I again think it’s an ICP increase thing). So I again often have regular ‘getting up breaks’ when sitting alot. I will also be extremely stiff when I get up and have to get my legs moving quickly to get them working properly again.

Travelling sitting in a car is particularly bad for me too. If I travel in the car or drive I sit in a very strange position with the seat really far forward and very straight or slightly leaning forward. I have also invested in a ‘wedge cushion’ to use if a passenger – to help align my spine better in the ‘bucket’ type seats, which seems to help. Bucket seats are known to be very bad for arachnoiditis/ AA sufferers.

ONGOING PHONOPHOBIA & PHOTOPHOBIA

My head is still very sensitive bright and flashing lights, fast moving images & to the layering of sounds. I still struggle with lots of noise at the same time. Like music with a beat, or music in the background with talking, or a combination of other general noises. The music I listen to these days tends to be quiet & acoustic and I usually listen with headphones in my ears to block out some of the other sounds. But all this is much better than it has been for a long time and this Christmas I have been able to tolerate flashing lights much better than in previous years.

TALKING WHILST WALKING

Talking & walking is much better for me now which has been helpful when it’s one of the only ways to see people during the pandemic restrictions. But sometimes it’s still a bit of challenge especially if my head is already a bit flared. One of my worst movements whilst walking is attempting to turn my head to look at things or to talk to someone. That will immediately fill my head with pressure, make it cloudy and cause a lot of pain and pressure in my upper neck. The same thing happens moving my neck to look up or down. So my key is to walk with my head facing forward and my spine very straight.

SINGING

I love to sing, especially with my husband, but singing has often been a key test of how bad my symptoms are since my accident. At their worst I cannot sing (or hardly speak) at all. Even during the first half of 2020 (pre-arachnoiditis diagnosis) my husband and I would often sing for our online church since the pandemic closed church buildings. But I would have to practice lying down then would only get up to record or live stream. But since my new treatment plan I can also sing more. A good example being our recording of Oh Holy Night for our Online Carol Service. I have not been able to properly sing this carol for the past five years especially because of how high it goes at the end. Normally singing that high would cause my head to full with pressure, make me feel drunk & cause me to need to lie down. But to our joy this year I managed to record this at home & this was actually done after a number of practices & a couple of takes – so that has been some encouraging progress.

GOING TO THE LOO

Going to the loo still a problem for my head & bladder. It still feels like either my pressure is increasing or I am quickly losing spinal fluid as I wee – as my head almost immediately feels very strange, full of pressure & my ears will often pop more showing a quick clear pressure change (like happens on a flight). It is also still often uncomfortable on my urinary tract which will still feel a bit irritated for a while before and after I have been. But it’s all much better than it has been in a while & especially in the summer. Previously I could often only go for a wee directly before lying down. Emptying my bowels also makes my head worse especially if there is any straining at all – which I avoid at all costs. Straining is not at all good for leaks or arachnoiditis.

MOVING FORWARD INTO A DIFFERENT SEASON

So it’s a mixed picture of massive gains made in the second half of this year, combined with a reality of continuing to manage many ongoing symptoms.

However, for the first time in a long time I have made much more progress & found many ways to stay busy & occupied within all my limitations. This has included helping the shift to more online church through video creating, editing and social media & website development. These are all things I can do, as and when I can, standing, sitting or lying down, either on my smart phone or for shorter bursts on the laptop. I also continue to help provide pastoral support – alongside my husband – for people in our church & connected to us. Although even a lot of this has had to shift online or over the phone this past pandemic year.

“The real work, the hardest work, is to pick up the pieces and decide how to put them back together again. The new thing that emerges may not work the way it used to, but it can bend and stretch and change us in ways we come to treasure even more.”

Suffer Strong – Katherine & Jay Wolf

That quote is precious to me because it describes my journey well. The past six years have been a marathon journey of learning to accept, adapt, stretch, bend & change according to my current abilities & limitations. My life journey since my accident has in no way been linear. Sometimes it’s been as changeable as shifting sands. Just when you get used to being able to do even more – you again simply crash, burn & relapse.

In those times of disappointment, in those moments I wasn’t sure I had the energy to start another recovery journey again, I found that I had to find ways to acknowledge the grief & pain but then allow myself to bend, change & be moulded anew. In those places I had to let go of finite disappointments & focus on…

A bigger Picture. A bigger Person. A bigger Presence.

… to carry me through.

Until, yet again I have found myself in the more peaceful place of slightly calmer waters. Having let go of who I once was and embracing the life I have been given now. Whilst choosing to allow it to be used to be a blessing & make a difference in others lives.

So that is the infinite hope that I cling fast to. A hope that is not based on the life I imagined, but is based on something far more significant. The the life I was given to live. So I must embrace all that it is – and attempt to use it for good. To make the difference in our world that only I can make. Reaching the people that I was uniquely called to love. And trying to offer hope to others overwhelmed by hopelessness.

Part of that process is continuing the task of simply telling my complicated never ending story – in the hope that it may become a ray of hope in someone else’s darkness. So today I want to tell you again to never give up. Instead choose to…

“Hope, hope to the last.”

Remembering that good can come again in our lives… IF we will only keep holding on and enduring for another day, another difficult season. However impossible that sometimes may feel.

“We must accept finite disappointment, but never lose infinite hope.”

– Martin Luther King, Jr

A long walk at Bradgate Park, Leicestershire over the Christmas holidays. It’s the first time in 5 years I have managed to travel over there and go for a long walk with my family. It marks another new achievement since being on the new treatment protocol.

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Here is my new summary video of my whole medical journey as well as footage of my January/ February 2021 adhesive arachnoiditis relapse/ flare and treatment with IV Steroids. To see my daily video diaries from this time please see my YouTube channel: https://www.youtube.com/channel/UC9ZkCy9B_IpeaGrXd0CEgow

For more posts of my arachnoiditis diagnosis please see the arachnoiditis menu above.

ARACHNOIDITIS INFO: ‘Arachnoiditis – Taming the Most Painful Pain’ Dr Forest Tennant video and Suspecting & Diagnosing Arachnoiditis (J. Antonio Aldrete) and The Arachnoiditis Syndrome (Dr Sarah Smith)

A medical paper supporting the use of steroids in treating early stage arachnoiditis and in the prevention of further adhesive arachnoiditis: Immunotherapies in chronic adhesive arachnoiditis – A case series and literature review

For more previous posts about my story of living with a spinal CSF Leak (from before we understood the arachnoiditis element) please look at the subject heading on the menu bar above.

SPINAL CSF LEAK INFO: Here is a brilliant 2 min animation about Spinal CSF leaks. For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org. Please see this May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition.

Enduring the Pain of a Chronic Spinal CSF Leak

“Try to understand others. If you understand each other you will be kind to each other.”

John Steinbeck

Trying to understand others is a big motivating force in my life. I have learnt from experience over the years that the more we can TRY to understand others – and they TRY to understand us – the kinder we will be to one another. Ignorance about others’ lives and what they have had to deal with in the past, or what they currently face now, is often one of the reasons we misunderstand and judge others behaviour and words. Listening and more understanding, on the other hand, is often the key to treating people with more love, grace & compassion in every way.

This is one of the reasons I have tried to tell my own story over the past five years as honestly as I can. To help me to understand and process my own journey. To also help others to understand me. But probably most importantly to try and help others suffering to not feel so alone and misunderstood.

I want to use my writing abilities to be a public voice and advocate for the suffering and oppressed – to help them express and understand the inexpressible within themselves and to help those around them to also understand. Whilst also providing a window to those in the medical profession to help them understand spinal CSF leak patients better.

“Speak up for those who cannot speak for themselves; ensure justice for those being crushed.”‭‭

Proverbs‬ ‭31:8‬ ‭

Many doctors have no idea how much damage they can physically and mentally do to their spinal CSF leak patients due to their own misunderstandings and ignorance of the condition. As I wrote about in Dear Doctor, A Letter from your Naked Patient.

My Background Story

In January 2015 I fell off a small step ladder whilst painting and hit my head and spine hard. Although a little dazed and bruised at the time, I generally felt OK. But over the next 48 hours I started to feel more and more unwell until I was left predominately stuck in bed in a dark room (to read more about that see my original Living with a Spinal CSF Leak post or Surviving the Storm post). At first I was diagnosed with a concussion, then post-concussion syndrome. But finally after admission to hospital 8 weeks later with things not improving and in some ways worse (on my third trip to the ED) – I was diagnosed with a spinal CSF leak.

Although my cranial and spinal MRIs were deemed normal at the time, I was diagnosed after 2 weeks of observation on a NHS city hospital neurology ward where it was obvious I only ever felt well lying completely flat. I also had a diagnostic lumbar puncture which was low (7). (Although I would never recommend using LPs to diagnose because of the high risk of a new leak and the fact that about 60% of leak patients will not show low pressure anyway*). I also then had 5 much better months directly following a blind lumbar 30ml epidural blood patch before fully relapsing again that September.

I have now had 4 blind epidural blood patches – all gave me obvious consistent relief for weeks to months. Although never fully and always transient. I have also had countless MRIs, a cisternogram and a CT Myelogram. Although it is only recently that my UK CSF leak team have flagged seeing a suspected leak on my spinal MRIs.

High & Low Pressure Fluctuations

Over the past 5 years I have experienced months of being almost constantly flat in bed and months of being upright all day (following epidural blood patches). But never symptom free and always struggling with hypersensitive reactions to normal pressure changes in my skull. At times after blood patches my symptoms have also typically seemed to shift into a more high pressure pattern of getting worse lying down and better upright. Although those times were also very confusing – as they often are for many spinal CSF leak patients who experience hypersensitive pressure fluctuations. Which can be even more heightened after treatment/ healing.

I have discussed this with a number of people over the years. There is an online support group for patients experiencing symptoms consistent with Rebound High Pressure symptoms and treated for such symptoms.

My friend Lisa’s experience of pressure fluctuations and rebounding from low to high pressure following spinal CSF leak self healing is documented here. (Also found at Series 2 Episode 6 here: www.nationalmigrainecentre.org.uk/migraine-and-headaches/heads-up-podcast/)

Micro-Managing ICP Equilibrium

We were actually recently discussing over Twitter how spinal CSF leak patients both before and after treatment/ healing become experts in ‘micro-managing their ICP (skull pressure) equilibrium’. Bending, carrying, lifting, stretching, straining, going to the loo, shouting, singing, twisting, exertion, opening stiff jars, lifting a full kettle, travelling on bumpy roads, stress & anxiety etc etc all tend to send pressure bursts/ waves into our head. Which when we are leaking, just seem to also make us leak more until it builds and we can no longer maintain a manageable pressure equilibrium in our skulls.

So to manage the condition, I have to ‘micro-manage’ my ICP. For me this means avoiding many of the things I mention above as much as possible or plan them before I lie down to rest. I also ask my family to lift/ carry/ bend for me as much as possible. I use a ‘litter picker’ stick to pick things up off the ground. I often try to delay using the loo until before I know I can lie down where possible. I also stand up most of the time I am upright because sitting makes me worse far quicker for some reason. (Perhaps due to the location of the leak and the stretching of the dura from sitting down.) Keeping my spine completely straight is my key to more upright time. And reducing the ‘pressure busts/ waves’ in my skull which build up to make me progressively worse until I cannot tolerate the symptoms any more.

How it Feels To Have a Spinal CSF leak.

Please note these symptoms are there every day without fail. This pattern is consistent each and every day.

The best way to explain it, is like an ever-increasing overwhelming dull pressure/ intensity in the head. As it gets worse (over minutes to hours depending on how acute the leak is), you feel more and more detached from the world around you. That feels a bit like being drunk/ or using ‘gas and air’ – but accompanied by a heavy, pressure pain. The pressure is in the whole head but I feel it particularly in the occipital area, in my neck and behind my eyes. At its worst it is accompanied by a ‘pulling sensation’ which leaves you feeling like your head is being pulled into your neck. Or that your neck isn’t strong enough to hold your head up. Also many of the nerves around that area hurt more and more.

It just builds and builds until your brain starts shutting down. You can no longer think straight, process well, everything feels impossible, you become disoriented and confused and you can feel very very nauseous and I sometimes even want to gag. Although never actually vomit like some people do.

I also get pain in the bottom of my spine which gets increasingly worse. So I have described to others that it often feels like I have a metal rod going through my spine with a clamp at the bottom of my skull/ top of my neck. And one at the bottom of my spine. The sensation is then like someone is tightening the clamps either end so that my spine is being tightened, shortened and my skull is being pulled into my neck.

I imagine that it’s simply the sensation of your brain ‘sinking/ slumping’ into your skull because of the intracranial hypotension. Caused by the lack of spinal fluid to keep your brain in its cushioned, buoyant place. I think then this causes me to feel tension throughout my spine hence the clamp feeling.

The overriding feeling is…

‘I CANNOT COPE.’

I cannot cope…. with this intensity in my head.

I cannot cope …. with this level of pain & trauma.

I cannot cope …. with thinking and making decisions.

I cannot cope… with attempting to formulate words to explain what is happening.

I cannot cope …. with attempting to function whilst my body and brain feels like it is shutting down.

I cannot cope …. with this impossible illness.

My husband says I become vacant, distant and increasingly slow to respond as it becomes obvious that I am in a bad way.

Those feelings just increase until you feel like…

I CANNOT COPE WITH ANYTHING!!!
I MUST LIE DOWN & REST!!!!

You then think about the best quiet place that you can lie down flat in that moment….

Like a drug addict needing their fix….

…. Or a person in perpetual excruciating pain needing a morphine injection.

It’s obsessive.

My ‘morphine’ or ‘drug of choice’ is to lie down.

Morphine itself doesn’t work nor do any other pain killers. ONLY lying down/ resting works. Hence the debilitation.

The Impact of Lying down To Rest

As I lie down flat I feel a wave of relief as, almost instantly, things get easier. It can take anything from seconds to minutes to begin to feel the easing of symptoms. Although if things have got too bad because I have pushed myself too long, gone out for a longer walk or if I have just been on a longer car journey, it can take up to an hour-plus for my symptoms to fully calm to more manageable levels – where I feel more fully relaxed again from the extreme tension and trauma in my brain and body.

But as it does ease, it’s like your head slowly begins to clear. The intensity gradually eases. The ‘clamps’ loosen. The pain begins to dissipate. The brain fog and confusion gets better.

I can finally think and talk more clearly again.

I feel more normal again … although never fully normal. Never how my head used to feel before the accident.

At my worst times – when I was probably leaking most acutely – after being upright too long (sometimes a matter of minutes) I would not even be able to walk or talk properly. My speech would become slurred and incomprehensible. My legs would turn to jelly and I would struggle to walk without holding onto things to pull myself back to bed. And everything would feel like a dream.

My brain would just begin to completely shut down.

Until I would HAVE to lie down, as if being saved from drowning in pain, trauma & confusion… and after 5-10 minutes of lying flat I could think and talk more normally again.

Countless doctors and nurses in hospital over my various stays observed this which helped confirm the diagnosis at that time.

Those were more my classic spinal CSF leak symptoms. My problems with doctors came when those times were extended to hours or even most of the day of being upright. Especially after epidural blood patches. That is when many spinal CSF leak patients fall through the ‘text book diagnosis’ cracks. Into the ‘chronic migraines’ or ‘NDPH’ (New daily persistent headache) or chronic fatigue boxes.

And yet I know hundreds of patients in the UK/ world wide who can be upright most, or even all of the day, with spinal CSF leaks still evidenced on their scans or found in exploratory surgery – proving that it is possible, and actually more common than once thought (as any up-to-date research on the subject will tell you). Some patients with all the symptoms but no scan evidence turn out in exploratory surgery to have a thin membrane covering the leak which stops them fully healing but provides enough covering to not show on scans and give them more upright time. Some of these patients started off leaking through a simple lumbar puncture, but were previously told by doctors that they definitely could not be leaking still, and suggestions made that they ‘spend too much time on Google’ or it is simply ‘all in their head.’ Which regularly pushes very unwell patients into deep despair.

This is part of what makes this condition very difficult to endure.

The fact is that lying down not only helps much of the intense, traumatic pain. But it also helps my focus and ability to concentrate so much. This means that I often opt to lie down to write messages or emails to people, or talk on the phone for extended periods – simply because I can ‘think straight’ lying down – much better than I can upright. Especially if I have been upright for a while.

I normally write most of these blog posts lying down too.

Current Symptoms

I currently find I have about 1-4 hours upright AT A TIME. Generally more first thing in the morning and if I am well rested. Before things get too unmanageable and I have to lie down again for 1-2 hours to recover. I am then up for a while then down again throughout the day. I have also learnt to generally try and pre-empt when I really need to ‘get flat again’ so it doesn’t get too bad. Otherwise I can’t cope and it takes me longer to recover. Some days – like today – I am more up and down like a yo-yo for shorter time’s to try and avoid longer periods flat and do more writing or things on my phone lying down.

This has actually all been much easier for me in COVID-19 ‘lockdown’ because being at home all day means I can plan my lying down breaks much more easily. It’s extended periods upright outside of the house which are hardest for me.

However, as much as lying down is my ‘painkiller’ of choice. I must tell you that it doesn’t always ‘make all the pain go away’.

We Do Get Pain Lying Down Too

I live with a constant underlying dull head pressure and pain to varying degrees. Since my accident I have never had a fully clear head without any pressure, fogginess or pain at all.

Not one day, not even for one hour.

I imagine that everything is so messed up, inflamed and damaged in my head and spine these days and with my ICP equilibrium. That the pain and feelings of pressure (to differing levels) never really fully leaves. And often if I ‘over do it’ either upright or trying to do too much lying down. (A lot of typing, reading or talking). I can get a different type of headache on top of my normal one. A very painful more frontal headache, combined with a feeling of pressure and nausea. That can really stop me in my tracks for a bit. I actually feel it a bit now as I write this on my iphone whilst lying flat. I imagine it’s partly the exertion of holding my phone, and typing a lot on it. Whilst also concentrating to write. Sometimes normal painkillers can help this additional headache a bit but not always.

That kind of headache makes me feel very sleepy and I yawn a lot to try and release the pressure. If I then get up I often feel my ears popping as if my pressure is trying to equalise again. I still obviously have a lot of problems regulating my skull pressure.

I must also add here that I can also get those ‘pressure bursts’ I mention about being upright – lying down too. If I stretch, move or turn over too quickly, speak too loudly or even ‘pass wind’ (funnily enough – that’s how sensitive my head is!!!) I get a tangible wave of dull pressure and pain into my head. That can also make me feel rather light headed for a few minutes. But it normally eases again lying down if I am still and quiet for a bit – but not always.

The Vicious Cycle of Stress and ICP Regulation

Stress is also a MAJOR problem for spinal CSF leak patients. Due to the natural increases in ICP stress and anxiety brings – it is one of our worst enemies. Which is a major problem when our symptoms and the resulting debilitation are SO stressful, and at times traumatic, to deal with. I fully believe that the 2-3 major mental health crisis’ I have experienced were in seasons of major stress caused by the trauma and exhaustion of dealing with the illness and trying to get medical help long term. As well as experiencing relapses and pressure swings post treatment.

That is when I go from manageable head pain (if I have consistent lying flat breaks). To unmanageable, perpetual, excruciating, persistent head pain.

Upright AND lying down.

It is the EXTRA PAIN (on top of the normal more positional spinal CSF leak symptoms) that pushes me ‘over the edge’. And that level of pain feels impossible to deal with. That is what happened when I fully relapsed last year and later wrote this article as a window into the torturous suicidal mind.

At that point I had relapsed again and was desperately unwell physically AND mentally. I saw my neurologist in May 2019 and we were rather confused as to whether my symptoms could be high or low pressure related. Due to some features that looked more like high pressure linked to terrible symptoms on a recent flight to Italy on holiday and previously head pressure and pain lying down and in the night/ early morning. Although after an ‘acetazolomide trial’ (a drug used to reduce ICP) made my symptoms doubly worse until I could hardly move, walk or talk upright at all. It became clearer that it was probably another low pressure relapse. And after a few weeks following the full relapse my symptoms fell into a clearer low pressure pattern anyway of symptoms being greatly reduced lying down. (Especially once my sleep was restored & extra Neuro pain helped by medication from the GP – Mirtazapine, Zopiclone & Nortriptiline which was approved my my neurologist.)

These confusions about pressure are very very common as there are so many symptom overlaps between high and low pressure and their differences are often not clear cut. ** They can also have paradoxical symptoms which can confuse many. I know people with low pressure sounding symptoms that turned out to have IIH. It is also possible to have high ICP/ OP readings from intracranial monitoring or LP AND a spinal CSF leak. (I know of many people who have had normal or high pressure readings (one with an OP of 45 and I have heard with someone with over 50) WITH an evidenced spinal CSF leak. So it’s never a simple process to know what is going on.)

Also Rebound Intracranial Hypertension symptoms following treatment – although increasingly documented are often sneered at or laughed at by most neurologists. I was onced asked by a neurology consultant secretary after none of the neurologists in the office had heard of it… “did you see it on google Mrs Hill?” in a sarcastic tone. It’s this kind of experience that just leaves you feeling stupid about the complexity and debilitation of your symptoms. I replied, “Yes you can find it on google – can I send all the links so someone can actually consider it.”

Holistic Calmness to Manage Symptoms

So, regarding all this, and as I have previously written about – holistic calmness is often the key to managing a chronic spinal CSF leak. But calmness is not easy to come by when you deal with the stress of everything I have described above. Calmness for me has to go so much deeper than for the average person to try to maintain enough balance to keep my symptoms under control.

I tried to explain this once to a friend of mine who is also a doctor. My ‘normal ups and downs’ are so exaggerated by this condition that I imagine what to ‘normal people’s’ body and mind might feel like small changes in equilibrium – to me is felt so much more acutely. Hence some doctors will perhaps purely attach such issues to a patients lack of mental and emotional stability, rather than recognising the underlying physical medical problem creating these ‘mental and emotional’ swings and issues.

Mental Health & CSF Leaks

As I have explained again and again to both patients and doctors – You cannot separate the physical and psychological in any medical condition… But especially in this condition. I like to call the combination of the physical and mental in spinal CSF leak patients and during recovery as ‘a big ball of mess!!’ Where it is impossible to know where the physical ends and psychological begins.

You just cannot separate them.

Especially due to the way this condition effects our ICP (head/ skull pressure) and how that then both responds to stress & triggers stress.

When I say: ‘I CAN’T COPE!’ It’s not normally because I cannot cope in my mental health – per se. It’s mainly that I cannot function physically in that moment so then cannot cope any more mentally with the physical trauma of those symptoms either.

Once I lie down for a bit “I CAN COPE” much more.

But anyone will tell you when you are in a lot of pain or feel really really ill physically – you also struggle to cope mentally too. So the more I try and push my body to do what it struggles to do physically, the more pressure that puts on me mentally and emotionally. Causing this vicious circle where the physical and mental simply feed off one another and you can end up in dangerous places psychologically too. This is why many spinal CSF leak patients can have both underlying depression & anxiety AND be prone to major mental heath crisis’ when their body and mind pack in after trying to ‘push through’ for too long. I believe we are massively more at risk of complete physical and mental breakdowns than the normal population.

I never had any mental health issues at all before my accident. All my problems have always been directly linked to my medical condition – as confirmed by both psychiatrists and the counsellor I have seen since.

Why I Share My Story Publicly

So there is more of my current story of battling a spinal fluid leak (and at times more recovery) for 5 1/2 years. This condition is still so often so unrecognised, under-diagnosed and so misunderstood that it causes many patients untold amounts of extra pain and distress.

This is seen again and again and again when you hear the hundreds of stories in the private Facebook UK and International Spinal CSF leaks and recovery support groups. Most patients have a MAJOR battle to be heard and it causes them untold trauma physically & mentally that can effect them well into the future. Even if they can and do more fully recover in the end.

That is one of the reasons I continue to share my story. To be a voice for others struggling – as much as for myself. To try to reach some who are suffering so deeply and feeling so alone and misunderstood. And to help their family, friends and maybe even their doctors understand this condition better.

Case Update

In my own case – I am still working with my UK NHS specialist neurologist and his intracranial pressure team to try and find a way forward to help me. At the moment this includes considering Digital Subtraction or Dynamic CT Myelograms to try and locate the actual leak site (which is often very complex and hindered by the fact that my last CTM caused me to seizure) or trying a fifth blind epidural blood patch as these have helped a lot in the past.

Although the current pandemic had delayed all that somewhat. And our NHS – although wonderfully free at point of access – is also often very very slow. Particularly for patients needing multiple scans and procedures to help them with long term conditions such and this.

So mostly I have had to learn how to live with this awful condition and find the best life I can within all of the pain and restrictions. And this is where I am immensely thankful that with the help of my amazing husband, family, church family, many friends and the spiritual support from my faith. As well as some wonderfully supportive doctors I have discovered on my journey. I have found a way to live and enjoy life – amidst all of its pain. With God’s help I have found purpose, meaning and hope even amidst so much personal destruction.

So I want to encourage all those reading this today. That even if your life will never return to what it once was. There is still more beauty, joy and meaning to be discovered here and now. It will take a lot of grieving, support and wrestling through the journey. But to find more meaning within it perhaps you could reach out to support someone else, help educate others about CSF leaks, volunteer for one of the CSF Leak charities or find new creative ways to use your skills & expertise to make a difference in our world.

Your Life May Never Look Like How You Once Imagined It

But maybe rather than giving up hope we need to re-imagine a life that IS worth living. Through grieving the losses deeply – accepting our new reality – but then by finding a new way of living. Here and now. As many others have had to do before us.

My story is a testimony that it is possible to rediscover a new way of living even when you are not yet well. A spinal CSF leak is not the end of everything.

It may be the death of the life you were living, or imagined you would be living.

…But sometimes it is also the beginning of some new things discovered that can be even more beautiful than what you knew before.

“Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.”

Dale Carnegie

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UPDATE: Please note that in August 2020 I was also diagnosed with arachnoiditis as well as a spinal CSF Leak – I now have radiological evidence to support both those diagnosis. To read more about the new diagnosis please see this link.

Here is my new summary video of my whole medical journey as well as footage of my January/ February 2021 adhesive arachnoiditis relapse/ flare and treatment with IV Steroids. To see my daily video diaries from this time please see my YouTube channel: https://www.youtube.com/channel/UC9ZkCy9B_IpeaGrXd0CEgow

Here is a brilliant 2 min animation about Spinal CSF leaks.

For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.

This post is a continuation of my Living With a Spinal CSF Leak post that I wrote 3 years ago. To read more about my spinal csf leak journey then please see the Spinal CSF leak tab in the top menu.

*Please see this new May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition. I was told so many of these myths by various neurologists, anaesthetists, radiologists and many other doctors during my lengthy and traumatic over 5 year battle with a spinal CSF leak. This kind of misinformation caused many delays, misunderstanding and great distress on my already immensely long winded and difficult medical journey.

**Please also see this other in depth 2018 medical paper about both low and high intracranial pressure syndromes and their similar and different symptoms. It also mentions cross overs with other headache types. When a patient suffers with a spinal CSF leak long term it can cause massive fluctuations in their whole pressure system both whilst suffering from a spinal CSF leak and following treatment. This is why lumbar puncture pressure readings and ICP pressure monitoring can prove an inaccurate diagnostic tool for SIH as this paper refers to as does the 10 myths paper. My initial LP reading was a 7 which was considered ‘evidence’ of low pressure by some doctors and normal by others. 

Finding Peace in the COVID-19 Storm

It feels stormy out there right?

Everything is so strange. In one moment our whole world has changed. A surreal season which we are struggling to understand. To catch up with or comprehend.

And as time goes on…

We all know people deeply affected by this world-wide tragedy. Those who got sick and recovered. Those who never did recover and so sadly lost their lives. NHS & care staff working on the frontlines dealing with new levels of stress, pressure and anxiety that those of us stuck at home can hardly fathom. Our day to day lives so completely transformed.

Will we ever return to the normality which was once known?

Can we truly find peace in this uncontrollable storm?

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Our chaotic unpredictable universe is reminding us of how out of control our lives often seem. We have again recently all had to face our own mortality and brutally realise how fragile we truly are.

Is anything certain any more? What does the future hold for any of us?

It feels stormy out there for so many. But it also often feels stormy in here too – right? Within us, in our chaotic minds. In our homes, families, relationships and lives.

Chaos is not at its worst outside of us. It’s actually most dangerous when it takes over within us.

How can we find stillness in chaos? Is it even possible without escaping from, or numbing away, our anxious thoughts? Or in trying to escape or distract ourselves from the reality of the current major struggle in our world?

These are important questions. Ones that I have had to dig so much deeper into and wrestle with a lot over the past five years since I fell off a ladder in January 2015 and sustained a debilitating brain/ spinal injury that I still have today.

In that one moment my life suddenly rocketed out of my control. One day I shifted onto a new life path I was never meant to take. A place I had not planned for or envisioned to live or endure.

These current restrictions due to the Coronavirus lockdown are actually not so strange for me, because the past five years have kept me predominately at home anyway. And for many hours a day lying down to control debilitating brain and spinal pain and other symptoms which means I still spend an awful lot of time in bed or on the sofa.

So many times my life felt devastated, as the restrictions and debilitation overwhelmed me. I watched so many around me continue on with their ‘normal’ lives whilst mine remained somewhat ‘on hold’ and out of control.

…. until ‘one day’ I would hopefully get fully well.

Then things could return to ‘normal’ I could again shift back onto the path I should be on.

But I never did get well…
I never got to take back control…
My old ‘normality’ never came…

So I have had to learn how to live here. To find a haven of peace even when the storm rages. To let go of my need to try and take control of my, or others, destinies. To climb out of the box of ‘normal living’ to embrace new spaces found in the ‘abnormal’ reality here.

It’s not an easy journey.

I know that so well.

It’s painful! It’s full of grief.

But it’s full of wonder and profound new discoveries too.

The letting go of control.
Of embracing a new way of living.
Allowing old dreams to fade.
So that new ones can arise.

I have had to adapt, I have had to change so much so as to find a new way of life that can be lived in this place. To discover new hopes and dreams within all of the restrictions. Rather than constantly grieving the life I hoped to be living right now.

I have had to dig deeper. To find peace and stillness – even when life doesn’t look like how I imagined it before.

Through all of my wrestlings I have discovered a deeper peace that I know is always there to be found. If I will continue to ‘let go of the old’ and ‘embrace the new’. Settling in my heart that change must come and that life can still be lived in the midst of all the restrictions and pain.

I must look for the firm foundation amidst all of this shifting sand.

Where is this unchanging peace found?

In my experience there is only ONE true and reliable avenue to discovering lasting peace. A peace that is described and experienced as ‘passing all understanding’. It’s unfathomable because it is not based on your circumstances going well. It’s not reliant on a peaceful place being found. It’s not even discovered only when everything is quiet & still.

Because for me… true peace is not the ABSENCE of something. It’s not a place where there is no longer struggle, pain or discomfort. Instead my experience of peace is the PRESENCE of something far more beautiful.

To be exact – my peace is the PRESENCE of SOMEONE!

A person who is always there and will never leave me, because He forever lives with me. He constantly dwells within me. He is all around me and will never forsake me.

My peace is a person… yet He is also a supernatural force.

My peace is so gentle … and yet He is also known to roar.

My peace is abundantly loving… and yet He challenges me each day.

My peace upholds me… even when I can no longer feel Him there.

My peace is Jesus Christ.

The tangible stillness that guides my life’s ship through the storm.

A place where He is fully in control even when everything within me feels like a storm.

An indescribable presence, so still, so restful, so easy. Where the heavy burdens I have been carrying are lifted. And His gentle yoke of unconditional love and undeserved grace is left in its place.

He is the ONE who has won my heart with the beauty of His unending Love.

He is my ultimate calm.

So many people misunderstand my Saviour. But it doesn’t mean that He is not there. He is always standing patiently, glimmering in the shadows of our lives. Knocking at the door of our hearts. Willing us to let Him in. Desiring us to allow His Light to radiate into our dark places and shine through our broken pieces into our hurting world.

So that we can experience the supernatural power of His peaceful presence. An unimaginable Love that takes you over as He enters in. Awakening you by the grace that He plants within.

In His peaceful presence there is a realignment of His Spirit and your soul. You find that you become restored back to who you were always meant to be. You discover the purpose for which you were created. You finally discover what it really means to truly be ‘me’.

In His presence the striving will cease as His supernatural rest takes over as He does His own work in you. His peace descends as you cease resisting who He made you and who you were designed to be.

I wonder – do you know that peace yet? Have you experienced its stillness?

Do you feel it now?

I feel that peace. The deep calm of knowing Him and Him fully knowing me. It emanates through and from His Spirit who came to live within me the moment I fully surrendered. The time that I was born again into His family. The occasion that I was made fully new.

He is my peace.
My love, my life, my all.

Do you desire to feel deep peace today? Has anxiety taken you over and you long for even just a taste of peace again? For normality to be restored? To discover the joys of how life used to be. To go away somewhere, to retreat back to your favourite places of beauty & joy. To return to a life that was more ordered and controlled, when your plans were not put on indefinite hold.

Well He is here for you – if you will call out His name.

His name is Jesus.

Call to Him today.

He is always waiting, always willing and always longing for your call.

Jesus said, “”I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.””

– John‬ ‭16:33‬ The Bible ‭‬

We will have trouble in this life. Our broken world is full of it. If we can avoid it today – it will somehow reach us tomorrow. But Jesus transcends the trouble in our world. And with your permission that presence of peace can enter into your own personal chaos.

You simply have to…
Let go.
Surrender,
And dare to let Him in.

You cannot earn peace. You cannot muster up enough positivity to win it as your reward. You can only surrender to Him and allow Him to do His deep work within you. Until peace begins to take control of all that you say and do.

I assure you – once you start to taste and experience the glorious fruit of His peaceful presence, you will be ruined for anything else.

Because peace is not a place. It is not an absence. It is not even an escape.

Peace is a person.

Peace is a presence.

His name is Jesus.

And you can experience Him now.

IF you will surrender and let Him in!

“Deep peace of the running wave to you.
Deep peace of the flowing air to you.
Deep peace of the quiet earth to you.
Deep peace of the shining stars to you.
Deep peace of the gentle night to you.
Moon and stars pour their healing light on you.
Deep peace of Christ,
of Christ the Light of the world to you.
Deep peace of Christ to you.”

– A Gaelic Blessing