Tag Archives: adhesive Arachnoiditis

Arachnoiditis, Spinal CSF Leak

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

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“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

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.

Arachnoiditis, Spinal CSF Leak

ARACHNOIDITIS UPDATE: ONE YEAR SINCE DIAGNOSIS

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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!

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!!

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.

Mental Health, Suffering & Grief

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

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“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

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

Arachnoiditis, Spinal CSF Leak

NEW VIDEO DIARIES: ARACHNOIDITIS & SPINAL CSF LEAK RELAPSE/ FLARE

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“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”

– Mother Teresa

At the end of January I had another horrendous relapse / flare of my arachnoiditis/ mild adhesive arachnoiditis & spinal CSF leak symptoms. Although I had experienced some pre-warnings in the weeks before, on Thursday 28th January my symptoms again exploded so acutely that I knew I needed to access another 5 day IV methylprednisolone ASAP, as previously agreed with my more local neurologist if that happened. It unfortunately still took a week to arrange for me to receive it at the local day case unit, especially as I really wanted to avoid going via the ED due to Covid and hospital pressures. It was also the first time of these arrangements being actioned which meant it took a little bit more time.

So as I waited at home as we and my wonderful GP team chased the hospital and my consultant to make arrangements for me ASAP, my husband and I made the decision to film what happens to me when I flare / relapse, and how I responded to treatment – as an open education and awareness project for other patients and their family and friends, as well as any doctors who may be open to listen and learn more about arachnoiditis and spinal CSF leaks.

We mainly decided to do this because when doctors, patients and the general public do not understand these conditions it causes us sufferers so many many problems in being ‘heard’ and accessing treatment. Also – as anyone can see from the videos when I am in a flare – things deteriorate dramatically in a week. Arachnoiditis/ AA flares should be treated as a MEDICAL EMERGENCY if doctors want to stop more permeant adhesions from forming – which could ultimately lead to paralysis, partial paralysis, incontinence and irretractable pain syndrome.

So I cannot stay silent!!

Without my IV steroid treatment, steroid taper and ongoing every other day 5mg prednisolone (steroid) and 75mg diclofenac (anti-inflammatory) & 4.5ml LDN (low dose Naltrexone via private prescription), I have no doubt the adhesive arachnoiditis would have moved into more severe categories over the last two flares.

It thus felt time to branch out into videos to complement my writing in this blog.

So I have a YouTube channel now packed full of educational videos showing my flare, talking about symptoms and how I have done in recovery since. I will keep updating my channel to talk about my progress or new things I am learning about that are relevant to the condition.

Here are some of the relevant videos and links:

This is my case summary video that was reviewed by a NHS Consultant friend before I posted it. I wanted to create a short summary of my whole medical journey that would also be of interest to doctors to and could be used as a presentation in their educational meetings and lectures if relevant.

Here are a few other videos from each section and a link to each ‘playlist’. All the individual videos can be found on my YouTube channel.

I will now add one or two key videos from each list here:

ARACHNOIDITIS FLARE DAY 2 SYMPTOM EXPLOSION
ARACHNOIDITIS FLARE DAY 6 WHOLE BODY HORRIFIC PAIN EXPLOSION
IV STEROIDS DAY 1 AT HOSPITAL DAY CASE UNIT
IV STEROIDS DAY 4 AT HOSPITAL DAY CASE UNIT
FINAL DAY (5) OF IV STEROIDS. IN THIS VIDEO I ALSO DISCUSS MY ISSUES WITH SITTING DOWN AND HOW I DO SIT. I ALSO TALK ABOUT HOW GOING FOR A WEE MAKES MY HEAD WORSE.
STEROID TAPER DAY 1 & STORY OF 2017 FLARE & SEIZURE FROM CT MYELOGRAM & FLARE FROM 40ML EBP
DAY 10 OF STEROID & ANTI-INFLAMMATORY TAPER PLUS INFO ABOUT RESIDUAL SYMPTOMS AND MILD SCOLIOSIS
DAY 12 OF STEROID & ANTI-INFLAMMATORY TAPER PLUS INFO ABOUT PAST RELEVANT RADIOLOGICAL FINDINGS OF TARLOV, SPINAL/ BRAIN CYSTS, BONE SPURS & OTHER GENETIC NEUROLOGICAL ABNORMALITIES INCLUDING POSSIBLE MARFAN SYNDROME.
DAY 3 OF NORMAL ALTERNATE DAY STEROID & ANTI-INFLAMMATORY PROTOCOL. (5mg Prednisolone & 75mg diclofenac). THIS VIDEO ALSO INCLUDES INFORMATION ABOUT MY APPROACH TO ANTI-INFLAMMATORY AND COLLEGEN BUILDING DIET & NUTRITION.
Year update added in July 2021

That should be enough videos to give someone more of an introduction to my new educational and awareness project. I have learnt a lot over the past six years about my two radiologically confirmed diagnoses, even though I only knew I had had arachnoiditis all along too since July 2020. (It can now be seen on my original 2015 MRI’s 3 months after my accident and before any of my spinal procedures. I also experienced symptoms of arachnoiditis as soon as my symptoms came on after my ladder fall in January 2015).

PLEASE NOTE: ALL MY VIDEOS & WRITING ARE FULLY IN THE PUBLIC REALM AND CAN BE SHARED IN ANY CONTEXT OR PLATFORM WITH MY FULL PERMISSION. MY ONLY DESIRE IS THAT PEOPLE LEARN FROM MY CASE SO THAT OTHERS DO NOT HAVE TO SUFFER SO VERY MUCH FOR 6 YEARS TO GET RADIOLOGICALLY CONFIRMED DIAGNOSIS. SO PLEASE DO SHARE THEM WIDELY!

Thank you to everyone for all your support in this new educational project. I had 1000 views of my main case summary video in one week and I know many doctor contacts saw and shared it. If any doctors do want to know more they should feel free to get in contact with me and I can share more about the hospitals, teams, GPs and consultants I am under – IF they want to find out more because this would help their patients to get treated more quickly.

I now have two written radiologically confirmed diagnosis of arachnoiditis from two senior NHS neurologists at two Midlands NHS hospitals. I continue my medical journey under both their care.

Email me at: beckyhillblog@outlook.com

If my journey changes the outcome for just ONE patient then it is worth it all. So if you are that patient today – I do this for you and pray that the information I share may make your journey a little easier than mine.

“Let me be filled with kindness, and compassion for the one
For humanity. Increase my love”

– ‘For the One’ Bethel Music

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.