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.
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.
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
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
“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:
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:
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: email@example.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”
“When you look another human in the eyes (or read their stories) and see how they’ve found strength in the face of their suffering, it makes you sit up with a little more hope.” – ‘Suffer Stronger’
Katherine & Jay Wolf (my addition in brackets)
Butterflies In The Dirt
I walk a lot at the moment. And if you know my recent story you will know the profound beauty in me just saying that. But walking still isn’t always easy for me because it can both help some symptoms and exacerbate other ones, especially my head pressure issues as well as my back and legs. But I am so grateful to say that it’s been getting easier again recently – since my recent new diagnosis and treatment plan. I can now walk much further and far more than I have been able to since before my last relapse in Spring 2019.
We are so blessed to have beautiful countryside five minutes from our house. And this seems to be butterfly season. Lots of white and colourful butterflies are flying around.
But often I see them like in this photo. Resting in the dirt. Being still for a moment on the dry, cracked and broken path. And through them God always reminds me….
You can always find great beauty in the broken dirt of life. If you choose to truly SEE it.
‘Could I have Chronic Arachnoiditis?’
Where do I start on the whirlwind of the past month or so? A couple of months ago I had only ever vaguely heard of something called arachnoiditis. And to be honest I was at a stage where I was far too weary for much new medical research. But that word ‘arachnoiditis’ kept coming back up, it kept being thrust back into my view – however much I tried to avoid and run away from it.
I believe now it was Divine providence – sweetly nudging me to pay attention. Because I would soon need that information in a critical way.
So I began to read and research yet again – another condition – another lead… and as I did my mindset went from a ‘no that can’t be me’ to it becoming quickly apparent how well the diagnosis fitted with my whole medical journey since my ladder fall in January 2015. It was actually a very timely speedy journey of revelation – that only by God’s mysterious grace – soon coincided with my most horrendous relapse/ flare ups in the whole 5 years I have been ill – that soon had me hospitalised for two weeks.
I am actually still in a state of both partial shock and partial wonder that following so many clear acts of Divine providence (key things and key people coming together at the right time) – I finally got the correct treatment I needed that perhaps reversed a more severe or even catastrophic injury to my spine.
A Unique Story
Here is my ongoing holistic medical story in its ongoing messy glory. It’s messy – because I am a typically messy human. I don’t fit well in others ‘boxes’ because I am unique. So although I share my story in the hope it might help others, assist their loved ones in understanding and to help any members of the medical profession to understand these conditions and their long term impact on their patients; I also want you to know that my story is my own unique story.
Of a unique body with a unique biological makeup, a unique accident and a unique resulting neurological injury.
That has caused me untold suffering for 5 1/2 years.
However, one reason I write is that perhaps my unique case can help shed more light on others unique cases too. Our stories are simply that – the truth of what is happening in our life as a WHOLE person. The truth of a complicated and rare medical journey in a complicated and unique human being.
I am not sure where to begin this next chapter in my story apart from to describe the events leading up to my hospital admission and the revelation that we may well be dealing with chronic spinal canal nerve inflammation as well as a spinal CSF leak.
Spinal CSF Leak
I do not have time in this blog article to explain my medical history since I fell off that ladder in January 2015. And how I fell onto my head, neck and spine very hard. How I was diagnosed with post concussion syndrome, then finally 2 months later a spinal CSF leak. (See this original article).I do not have much room here to explain that my current NHS ‘intracranial pressure MDT’ have seen evidence on my MRI of a small CSF leak in my neck (cervical ventral spine). To read more about that please see this blog article.
PLEASE NOTE: Many of my ‘arachnoiditis symptoms’ started after that fall alongside the ‘spinal csf leak symptoms’.
They have always been very interconnected. Apart from the severe lower back/ sacrum pain. (That got worse over the latter months to years after that original fall). However, many of these key symptoms were there from that first week after I fell – it’s just the more severe pain was more in my neck rather than lower spine the first few months (Query – maybe it could have started as ‘cervical arachnoiditis’ around the potential leak site following the trauma & spread as arachnoiditis can?). My neck certainly took much impact in a funny position with my head hitting a raised ledge. All the main bruising was all down my right arm and pain into my middle fingers. I have always had major nerve issues and acute stiffness in my neck (although that is also typical of SIH neck pain). Although I also developed the severe leg weakness & gait issues and whole body tingling/ spasms & jerking etc from that first week – so I am not sure how it all works together.
And just to state here: I have not had a medical procedure in or near my spine since September 2017.
This Relapse/ Flare Story
This relapse actually followed my typical pattern of relapse (last one Spring 2019). There was no clear trigger this time – although in hindsight Covid lockdown brought changes to my routine that might have added to things. For about 2 weeks before it fully hit me I began to feel more unwell than usual. My forever troublesome back/ sacrum area was getting worse again and that was causing me to often lay down more than my head. I felt like I had 100 tiny pins stuck in my sacrum and down my legs. My legs started getting markedly weaker especially towards the end of short walks. I had more pins & needles in my legs, feet, saddle area, arms and hands. My head and ‘normal leak symptoms’ were also clearly worse.
So we typically asked those questions – ‘Am I doing too much?’ – ‘Perhaps I need more rest?’ – ‘Perhaps I have a virus or even coronavirus ‘(I even ordered a test). But this time there was something else. I felt like a had a UTI – and my bladder didn’t feel right. I just felt like I constantly needed the loo and there was a constant burning around those nerves too. And that’s bad for me because for years going for a wee makes my head much worse. So it was all just so painful for me. So I did a urine sample for the GP nothing came back as abnormal. Everything was getting increasingly painful & exhausting.
Then my symptoms do what they always do when I relapse or flare – like my last one in Spring 2019…
Everything suddenly EXPLODED!
A day came – a Friday – when I got up as normal. But it was tough. It was really very tough. And within half an hour my body was flooded with that overwhelmingly debilitating draining feeling from my head down. A feeling I have known so many times. The feeling that came when I first got ill around 48 hours after my ladder fall in January 2015.
A Sense of Being Unbelievably Unwell
At that point my worst symptoms all very quickly returned: the inability to speak, the slurring, the slowness to respond. Then came the weak legs giving up and the having to pull myself back to bed. Then as I lay down back came the twitching, the jerking and the spasms. And the feeling that I may just pass out any moment – but never really do.
I cannot explain how awful it is to experience that. But it is not uncommon for me. That has been my normal since the start from after my fall – when things are bad.
But this time some things were worse. Mainly my back. The nerve pain exploded, I could no longer lie on my back at all, it was all down my legs. It all burnt, stabbed and tingled. The pain was just getting worse. I could hardly stand or walk at all.
I just felt weird, my whole body was full of pins and needles, both inside the whole of me and all over my body. A bubbling, strange sensation in my whole body – feeling stuck in another world. Mind can’t think – I struggled to process & respond.
I then started struggling to be touched by anyone. Everything was hypersensitive. Everything hurt so bad and people touching me would often just make me twitch, jolt & spasm.
Two Wonderful Doctors
By this time our (including two key doctors) minds had been opened to consider a new diagnosis of chronic arachnoiditis. As I said before – as I began feeling more ill the past two weeks I again had read more. And as I read about its symptoms, triggers, biological predispositions, links to spinal fluid flow, leakage & seepage, multiple spinal procedures and the presence of spinal cysts. It rang too many bells to ignore. So I had sent information to the two main doctors (from two different hospitals) who know my case well. My current neurologist and a doctor who has generously followed my case and CSF leak updates for years even after me moving on from their hospital. They had both already agreed that it was something that needed considering. I ticked so many boxes already … as shown in this list I made into an image.
In the end after updating our more local hospital doctor contact about my worsening symptoms that Friday, he called on the Saturday & spoke to mainly my husband – as by then I was struggling to talk and respond at all. After listening carefully about what was happening and asking various questions – he advised us to call an ambulance and then kindly in advance explained my case to the consultant neurologist on call. I am so deeply grateful for this doctor who has had so much patience and humility over the years to listen and understand my whole medical journey, in a way that he became the advocate I needed. He was my voice when I had no voice.Especially as my husband could not be with me at all due to Covid lockdown and seeing as I often feel so intimidated, scared & anxious around new doctors due to my case being so complex – especially when my speech and thought processes are so impaired.
Admission via Ambulance
The ambulance crew came and by then I was in such a whole body nerve pain flare I was very hypersensitive to touch, examination and even having my blood pressure (BP) done. It was all excruciating and would just make me jolt and spasm. I could only slur and half speak with very delayed responses. They thought I had either a stroke or meningitis. Although the stroke team at the ED soon ruled that out and the medical doctor who saw me was baffled but knew I needed to be admitted. And although struggling to speak – I managed to direct them to my medical files to read my history (as I lacked the ability to explain it myself). And after a couple of days on a medical admissions ward – I finally made it to Neurology.
At this time I had ALL the red flag symptoms for arachnoiditis/ lower spinal canal nerve inflammation/ and things were only getting worse.
Brain and Lumbar Spine MRI
I had to be very deeply sedated for my brain & lumbar spine MRI as I could not lie on my back for more than seconds to minutes without spasming/ twitching or jolting. Which really would not work in an MRI machine.
However the MRI was read as clear for both low CSF pressure/ SIH (which is normal for me) and adhesive arachnoiditis/ cauda equina inflammation or compression/ epidural fibrosis and anything else considered etc. Although interestingly at first they also missed reporting a possibly key piece of the puzzle due to seeing it as an ‘incidental’ finding.
I have at least 1 or 2 Tarlov cysts in my sacrum. Which I now know can both potentially cause cauda equina inflammatory disorders (CEID) but can also be the result of that inflammation. They keep not being reported from my multiple scans (I had to view my own scans and ask in 2017 for the confirmation I had a Tarlov cyst/s – but were told they are ‘incidental’.) Which I already knew is not necessarily true because Tarlov cysts can actually also become symptomatic after a fall. You can actually leak or seep spinal fluid from Tarlov cysts and they can effect normal spinal fluid flow to cause intracranial hypertension (high pressure headaches). They can also cause issues with sitting down and effect your lower extremities & bladder & bowel function. This video from a German Neurosurgeon who is a ‘arachnoiditis and Tarlov cyst specialist’ even describes Tarlov cysts as a form of arachnoiditis as well as often an additional feature. He later discussed it further here and shared his experience in surgery is that everyone with Tarlov cysts has evidence of a form of arachnoiditis. So they are VERY relevant to my condition. (See here for Dr Tennant’s bulletin on this or other medical articles below).
Other Spinal Cysts & Potential Connective Tissue Disorder
I also have an arachnoid cyst in my brain. Multiple prominent meningeal diverticula cysts in my thoractic & cervical spine. And a small pituitary cyst (I am under Endocrinology for but has remained unchanged). Could any other of these also be more than just incidental findings to my wider case – could any of them be part of a bigger picture of spinal canal inflammation/ collagen weakness/ biological predisposition – which can all be connected with arachnoiditis and spinal CSF leaks and seepage? (My NHS CSF leak team were already very mindful that about 30% of ‘leakers’ leak from meningeal diverticula.)
My Dad also has some undiagnosed key features of Marfans syndrome (including pectus excavatum & more recent heart problems) and he is tall with long thin limbs like me – which could mean I am more pre-disposed to all these things genetically (50% chance if he does have some Marfans). There are also some hypermobility features in other close family members. Although I have never been hypermobile AT ALL and was very healthy until my fall. But perhaps any such genetic predispositions could be hiding in my spine. I do have a mild scoliosis of the spine. My Mum also died six years ago following complications after surgery to remove a massive benign brain tumour. So there is a family history of neurological abnormalities there too.
Lack of Knowledge or Expertise to View scans
The first issue with scans is that arachnoditis can be very hard to seeon scans until it becomes adhesiveand even then many neuroradiologists miss it due to lack of experience with the condition.
The other main problem I have is that I am most doctors’ and neuroradiologists’ first known or one of their first known recent cases of arachnoiditis. Many of them do not know much about spinal CSF leaks either. So they lack experience of the conditions. I have also been informed by more expert neuro-radiologists/ doctors that you really need head to toe axial MRI images with IV contrast and/ with both T1 & T2 weighting and VERY experienced eyes to diagnose features of arachnoiditis or spinal nerve inflammation or even actual AA. (Although I am hopefully due more scans soon more like this soon and have been seeking out more experienced eyes to view them). One of the articles below also suggests that the use of ‘stir cycle’ images on MRI might help to spot the neuro-inflammation.
Pls note: I went on to get radiological support for the diagnosis.
Whilst waiting for the MRI and deciding what to do, Neurology put me on pregabalin for the excruciating nerve pain, pins & needles & hypersensitive reactions etc. Diazepam for the spasms, jolting and jerking, paracetamol, laxatives. And I was already prescribed zopiclone by the GP that I tend to mainly only use during ‘flare ups’ because I always develop severe insomnia. (Another typical arachnoiditis symptom).
The combination of these medications did help me and eased some of the symptoms and allowed me to sleep more. I finally got my voice and mental clarity back so could begin to self advocate again and help the doctors to better understand my case and journey. But I was still stuck lying on my side with legs that hardly worked, bladder & bowel issues and pulling myself to the bathroom whilst walking on tip toes because my feet burnt & legs hurt too much to have my feet flat on the ground.
Dual Hospital Team
By then my more local hospital neurologist got in touch with my specialist low pressure/ spinal CSF leak neurologist (from another UK NHS hospital) who at that time happened to also be treating a friend of mine (from the online leak support groups) for early onset arachnoiditis following various spinal procedures at another separate hospital. So he was learning fast about the condition.
That friend has also been the absolute star who first provoked me to start looking into arachnoiditis due to her sharing her own very courageous, but deeply devastating recent journey of getting a spinal CSF leak following a lumbar puncture (multiple attempts) from another different hospital that went very wrong.
Then in embarking on the journey of getting that fixed she developed acute arachnoiditis. (If it is diagnosed and treated with (IV) steroids in the first 60-90 days you can completely reverse it and prevent it becoming adhesive)(Read this medical article for further details)
So she and my normal neurologist (whom she had approached for help) had already been learning so much – which was one of the timely things that helped me so much in my own time of desperation and need. For that special friend – I am forever grateful.
It was finally agreed by my hospital Neuro team, my normal specialist neurologist (from the other hospital) and the hospital anaesthetist who had done two of my epidural blood patches in 2015/16 who was also involved – to trial me on the emergency treatment for arachnoiditis. Mainly as the risks and side effects of the treatment were lower than the risks of leaving me with a potentially severe arachnoiditis flare up which could be causing me more permanent damage & adhesions.
So they trialed me on 500mg of IV steroid methylprednisolone – the first dose carefully observed but I responded very well and straight away felt a boost of more clarity, energy, eased symptoms and stronger legs. So I then I had a total 5 days of 500ml IV steroids methylprednisolone.
Results of Steroid Treatment
The results of the 5 day treatment were actually quite dramatic in reversing this flare up.
The main change was probably to my legs. I could finally walk more normally and started walking up and down the ward, then out in the wider hospital, then I ventured for 30 mins to 1 hour walks around the grounds. This often included walking up 6 flights of stairs to the Neuro ward. This was a million miles away from willing & pulling my unimaginably painful, burning and tingly legs to the nearest bathroom.
My mental clarityreturned so that I went from hardly being able to speak, to speaking with more clarity on the other medications, to finally being able to have hour long conversations and speak to the staff and other patients more easily.
The back pain, pins & needles and burning reduced considerably. I could lie on my back more (although still very tender – but that has been normal for years). I had a lot less leg pain. My photophobia radically improved and I could remove my sunglasses and stop covering my head. The meds had dealt with a lot of the jolting and twitching – but that now completely disappeared. I still had positional head pressure that got worse the longer I was upright – but I could be up for so much longer than when first admitted. My bladder and bowel also began to function more normally (although going to the loo still makes my head worse).
I did so well that I was finally discharged 2 weeks after my admission. Having not been able to see my husband, kids or any other visitors due to Covid lockdown restrictions.
Diagnosis from my Normal Neurologist
The next day I travelled to see my wonderful normal spinal CSF leak specialist Consultant Neurologist who was given the task of continuing my follow up. He had been kept informed about what had been happening during my stay at the other hospital and had been consulted. But obviously again still took down all the history of recent weeks and did his own neuro examination which actually showed after two days off the IV steroids some things were getting worse again and I found the examination more distressing again especially in my back and legs.
So he made a clinical diagnosis of arachnoiditis (we cannot know if it’s become adhesive at all over the years without scan evidence – so that needs to be investigated) as well as a spinal CSF leak.
He put me on an oral prednisolone taper as well as diclofenac (for neuro-inflammation), pregablin, omeprazole (to protect stomach) and very occasional use diazepam if needed (only used so far for travelling as sitting in the car for long journeys can still be torture). Restoring the (oral) steroids helped to again reverse things getting a bit worse again after the IV treatment ended.
It’s still early days but I can report that my legs continue to get stronger and I am now walking at least three times a day from 20 mins to 1 hour at a time. (I have not been able to do that since before my last relapse in April 2019). I am keeping this routine because walking and gentle stretching is thought vital to help stop the disease progression and nerve adhesions developing. And walking and gentle stretching exercises can potentially help any scarring and adhesions that might already have been there. My 5 year journey has also shown my best times came from more walking (but within balance) when I was able to. So that gives me confidence that it is of key importance.
So I am thankfully doing much better than I was.
A key feature being I can be upright a lot more than I have been able to for over a year and my head is much clearer than it has been for a long time. I still have many issues – so fatigue or the sacrum nerve pain is often the main thing still causing me to lie down to rest currently – although my head issues are always present too.
But I am so happy that we have perhaps reversed me moving more permanently into a more severe category of disease progression at this time and for that I am so very very grateful and thank all my doctors who worked as a team to help me.
The Tennant Foundation
I have to also say here that I am immensely grateful for all the expertise, medical articles, research and even direct emails from the founder of ‘The Tennant Foundation Arachnoiditis Research & Education Project’. Although in his late 70s and retired from clinical practice Dr Forest Tennant continues to offer so much advice, support, research and help to patients with arachnoiditis, AA or chronic cauda equina inflammatory disorders (CEID). It is his hard work and ongoing research (amidst others) that has helped myself, my dear friend who helped me & my specialist Neuro and many other doctors learn so much through his work.
Useful Links from Arachnoiditis Experts including Dr Tennant….
So I am at the start of a new medical journey… As well as 5 1/2 years into it. I am still not well or normal by any means. But I have made massive improvements since this recent flare & in many ways on how I have been for about the past year since my last relapse. I still have intracranial pressure issues. I still have major sacrum nerve pain problems – but less than I did. It’s also very hard to know what could be directly related to the arachnoiditis/ possible AA/ chronic cauda equina inflammatory disorder because these can all effect spinal fluid flow and can cause leakage, seepage and can cause spinal cysts to form/ grow which can then add to inflammation issues. My head seems better than it has been in a long time – but still has many issues.
What is simply the spinal CSF leak? What is connected to the new things were are learning about now? It’s hard to know.
Multiple Spinal Procedures
I still believe this all started as a direct result of that fall and my biological predisposition. I had so many of these symptoms for the two months before my first ever spinal procedure (a lumbar puncture to check pressure which was a 7 at the time). However, my multiple spinal medical procedures (1 diagnostic LP (OP 7), 4 BEBP, 2 LP’s for Cisternogram (OP 10) & CT Myelogram (OP 11) and 1 LP accident instead of an EBP), may well have added to my spinal nerve inflammation issues in different ways. I often found EBP could clearly help some things but as time went on they could also could cause flare ups of intense pain in the following weeks/ months too. We often wondered if this was due to Rebound High Pressure issues, but perhaps it was also (or perhaps more of) an inflammation flare.
My CT Myelogram in September 2017 also caused a seizure within a couple of hours of the procedure (perhaps that was partly due to both the horrific pain, contrast irritation or me staying lying flat afterwards). My already acute symptoms then became even worse – including my weak legs, restricted gait and ‘drunk head’ sensation. So they admitted me – then requested an EBP (although the first attempt became another LP unfortunately). I then had a massive spinal and non-positional head pain flare for at least two months after that (although interestingly I could also be upright more than before the EBP). But the constant pain and often nausea around that time again- at times- left me feeling suicidal as it was so unrelenting. Until I instinctively started walking rather obsessively – which again may have been my saving grace back then as walking can help prevent adhesions forming.
I am NOT Angry with Doctors who Tried to Help me
I feel no resentment at all towards the doctors who requested those procedures or did them. They were trying to help me with ongoing debilitating low pressure headaches as best they could and didn’t always understand these other complications well. Many of those doctors also fought their own battles to try and help my case at the time – so how can I be angry with them doing their best for me according to what they knew then? Also some of those same doctors have been wonderful at listening – and absolutely instrumental – in helping me now which helps the sense of learning together. And learning together means learning through both the good and the bad – especially in rarer/ misunderstood conditions. So as long as they will now also learn lessons from my case in being much more aware of complications such as arachnoiditis and spinal nerve inflammation, then I remain grateful for all their help on my journey.
I DON’T expect doctors to know what they just don’t know. But I DO expect them to listen, learn and consider with humility when new possible complications and complexities emerge they may have little current understanding of.
Other Previous Flare Triggers
Also I have equally had flares/ relapses due to a second bad trip and fall in May 2017 or over-exercising perhaps without also reducing neuro-inflammation (esp a few weeks following my second EBP in November 2015 from which I had actually seen much low pressure symptom improvement). However, I tried some heavier exercise due to all the residual neck, spine stiffness, pain and ongoing head issues – but this ultimately lead to a serious pain and awful symptom flare including severe insomnia 6 weeks after the patch & my first serious mental health crisis.
I have had other flare ups perhaps triggered by long car journeys, or even plane or bus rides, like in April 2019 after a holiday to Italy which again also caused a very serious mental health crisis too due to severe insomnia and constant unrelenting awful pain. See my A Window into a Suicidal Mind blog post. (‘Bucket seats’ like in many planes & cars are reported as really bad for arachnoiditis/ AA patients). And perhaps this time the Covid lockdown added to the flare because I was doing a lot less walking and natural physio (shopping & driving locally) than before which I now understand is so important to stop disease progression. We must keep walking and moving to stop nerves sticking and clumping together.
The Next Step
The next step is hopefully to continue with a low dose anti-inflammatory/ steroid treatment and gentle exercise protocol. But that is all to be discussed further with my GP & Consultant Neurologist. I also need more appropriate scans and to get them read by someone with more expertise. (I am currently waiting for a further outpatient MRI at the hospital I was admitted to.)
I know from experience that having the ‘evidence’ many doctors like to see isn’t always possible. But not having it doesn’t mean you do not have these conditions. (It took 4 years and multiple scans for a neuroradiologist and neurologist to spot a suspected spinal CSF leak in my neck.) I know people whose scans have been read for years by top neuroradiologists, neurologists and neurosurgeons who have all missed CSF leaks, arachnoiditis or AA that has only been picked up by a specialist on those same scans some years later.
Sometimes we unique patients do not ‘tick all the boxes’ or give the desired evidence – especially with rare / misunderstood conditions – as I wrote about in my widely shared post ‘Dear Doctor, A Letter from Your Naked Patient.’But it doesn’t mean we are not exceedingly unwell.
Sometimes the truth is there – but it’s hiding – and can’t be seen by most doctors until someone more knowledgeable gets involved or those same doctors spend a lot of time researching these conditions to make the necessary connections. Also arachnoiditis will often not show on scans unless it becomes adhesive.
Which is why a clinical diagnosis and emergency treatment – without scan evidence – can be vital in preventing potentially catastrophic adhesions and nerve clumpingwhich may only show on scans once that patient is significantly permanently disabled by the condition.
Gratitude for Doctors
I will keep on pressing forward. Seeking more answers. Looking for the correct treatments and working with some of the wonderful doctors I have supporting me on this journey – both old & new.
Without an open minded and open hearted multi-disciplinary team of doctors across two hospitals coming together to help me in recent weeks. – including the two key doctors who have followed/ dealt with my case for years– my current prognosis could no doubt be even more bleak. I have never been THAT bad and so many red flags were being raised that I was perhaps moving into realms of more permanent spinal damage if left like that. Especially if things could have been becoming more adhesive.
Some people withsevere adhesive arachnoiditis can end up paralysed, partially paralysed andincontinent and possibly with intractable pain syndrome IF they do not receive the right treatment and ongoing treatment protocols at the right time. So if someone is in a seriously debilitating ‘red flags’ flare, like I was, then it should be considered a medical emergency.
The Joy of Gratitude
I am so deeply deeply thankful for all the support I have had from my ever faithful, constantly sacrificially loving and understanding husband and very resilient teenage daughters. As well as many wonderful doctors, other fantastic medical staff, our family, special friends (already battling these conditions), our church family who have cooked and prayed hard for my family and looked after us and many many more supportive professionals and friends. And that gratitude and wonder is something I will allow my mind to keep pondering, to keep meditating upon – even whilst I continue on my journey of enduring what is often the burden of unimaginable daily struggle & pain.
… Although at this moment in time that is a bit easier than it has been for a long time.
Because to remain grateful in suffering – to keep remembering all the abundant love, support, care, kindness and compassion you have been shown by God and others – is a big part of always seeing that beauty in the brokenness.
As I keep being reminded of every time I see, yet another, stunningly designed, beautiful butterfly resting in the broken and cracked dust & dirt.
There is always beauty to be found – even in the dirt. IF we will keep our eyes & heart open to SEEing it.
“When we are grateful, we are most fully alive. Gratitude allows us to absorb every possible pleasure from a moment…. When your heart is full of gratitude, life paints itself in far brighter and more vivid colours…Life becomes an endless celebration… There is always something that fills you with joy & unleashes hope and inspiration.”
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.
Writing to explore what life is about. Amidst its captivating beauty and deepest pain. In the hope that we can learn, grow and be inspired together.