In this new blog post I want to introduce you to two of my videos, made in the past year, that attempt to describe some of my stranger or more ‘bizarre’ symptoms and how I manage them. The videos mention 12 symptoms each. So I have titled this blog post ’24 bizarre symptoms’ although there is certainly some overlap in some of the ones mentioned. This is by no means a definitive list – simply an attempt to list around 12 at a time to try and connect with others suffering and raise more awareness of these conditions.
Some of the symptoms are also more ‘bizarre’ than others.
Although they are all my normality.
I have been diagnosed with arachnoiditis (mildly adhesive) and a spinal CSF leak. I continue under the care of two UK NHS neurologists at two midlands NHS hospitals. They work together to oversee my care and my ongoing treatment with oral and IV steroids as talked about in previous articles.
People with spinal CSF leaks, arachnoiditis, AA (adhesive arachnoiditis), tarlov cysts and other similar conditions regularly comment on my videos on YouTube or via my social media posts on the videos. When people have watched these two symptom videos, they often express that they experience all these symptoms, or many of them, and appreciate me trying to explain what they often find so hard to put into words.
That is the privilege of being something of a public communicator and having the ability and capacity to both write and make videos. I have thus found an opportunity to be a public voice for people who often feel like they have no, or a very little, voice.
It actually also encourages me when people comment or reply because we can then share those ‘me too’ moments. There is always a deeper community discovered in the mutual understanding and experience.
We feel less alone when we meet others like us.
I am also well aware that I am in the very privileged position of currently not being so severe as others symptomatically. I regularly hear from people who are mainly stuck in bed or who can hardly walk at all – due to a leak or AA. I never take for granted how functional I currently am – when not in a flare/ relapse. However, I have also certainly known debilitation that has left me bedridden for months at a time. I have also known excruciating 24/7 pain – not only when upright – but all day and all night due to the arachnoiditis flaring on top of a leak and ongoing CSF pressure and flow issues.
So although my case may currently seem comparatively mild compared to others who can only dream of being upright most of the day or walk 10k steps each day. I have certainly tasted of much worse than this, and still occasionally end up back there when I do flare/ relapse. And who knows where things will progress in the future…
… and in that regard I have to train my mind not to dwell on the fears of the unseen and the unknowns of the future. There is always hope – and we never know what medical breakthroughs might one day arise.
“Today is mine. Tomorrow is none of my business. If I peer anxiously into the fog of the future, I will strain my spiritual eyes so that I will not see clearly what is required of me now.”
– Elisabeth Elliott
I do remain exceedingly grateful that we have found a way to manage and treat the arachnoiditis, in particular, that has improved my quality of life so much and also is hopefully stopping a much quicker progression into more severe AA.
So I again write this article with compassion, empathy, love and gratitude. For where I am at – and the privileged position I am in – yet also mindful of the even worse acute pain some of you are living with each and every day. I do understand and relate in so many ways. Even when our stories might be quite different.
These symptom lists should show – although I am comparatively functional – I am still immensely restricted. Nearly every part of my life is impacted by the need to manage this condition – to stop the pain, immense challenges and restrictions overwhelming me.
There is a sense in which this ‘symptom profile’ is just my daily normality. You really do just get used to it to a certain extent! However, sometimes voicing and listing them can also be liberating, in allowing my mind to recognise the immense difficulties in living this way.
Even typing this at the moment on the laptop is an endurance test…
My lumber pain is building to intolerable levels, as is my neck pain. The metaphoric clamp in my neck and sacrum is being tightened, my spine feels so ridiculously tense and pulled. My legs are getting increasingly tingly and feel weird. I am becoming more and more aware of the discomfort of my feet touching the ground (as it is still slightly easier to use the laptop standing). My head is getting increasingly full, and the tension from my neck is extending to a band like tension behind my eyes. My eyes hurt, my concentration is beginning to fail as my head feels fuller – and reality becomes more cloudy, hazy and distant. My body is also feeling increasingly overwhelmingly hot as I try and push through another sentence or two.
And I have only been standing here typing for about 20- 30 mins max.
That’s how restrictive this is. Gone are the days of working on a computer all day or sitting down for extended times to work.
That is no longer possible for me.
So for now I will have to step back from this for a time, to move around, go for a walk… anything but endure the pain, distress and nausea I am subjecting my body to in pushing through to write for 20- 30mins.
So bye in this moment… I will be back again soon.
So 40 mins on since I wrote the above – I have moved around more again and went out for a 20-30min walk. As I left the house my head was so full and things felt more distant and intense. As I walked I felt really sleepy and was constantly yawning for about the first 10 mins and my ears, crackled and popped as my pressure attempted to equalise more. It never fully does – my head is always full of pressure to a certain extent – but after about 10-15mins I found I was yawning less and focused on walking more.
To be honest – many of my long daily walks are like taking medicine or doing physio. They are a need rather than always enjoyable. Something that needs to happen – even when much of my body would probably prefer to lie down in bed or lie on the sofa and watch TV. But I have learnt that walking is better for my body, mind and symptom management. The reality is that I could probably relax at first lying down … but the longer I do so, the more likely I will get an awful headache lying down too. Especially if I try and do anything like write on my phone, read or edit videos.
It’s the vicious circle. The constant need to change position. To move about as much as I can.
So for me – earlier in the day – the more walking the better. Because later on – I will probably just not have the energy any more. And walking when it’s dark (especially in the winter) is never so good.
It’s a challenging life. But one which I try and make the best of.
Some days I do love to walk. I am so grateful to still have that ability and for the nature, trees, sky, beauty and for those moments alone to think, pray or listen or to talk with a friend or loved one.
Other days I only do so because I know I must.
Like taking a horrible medicine or exercising when you would rather be in bed.
Because I do know it helps me – a lot. And one of my greatest desires is to help myself manage all this as much as I can.
But it IS exhausting living like this.
But so much better than the alternative – the days of being housebound and stuck in bed.
So I must remember to stay grateful for each and every step and the freedom they bring.
So there again is a written glimpse into some of the challenges I face each and every day. However, for now the time has come to move from written – to spoken words. To share my two videos on some of the multitudes of symptoms I experience daily.
What is caused directly by the arachnoiditis/ AA, what is a small leak still there, CSF flow issues or CSF pressure issues. I cannot always say for sure.
We ‘chronically ill’ spend much time deliberating, analysing and wondering what causes each and every symptom. Sometimes, over time, the picture becomes clearer – albeit still somewhat muddled.
This is my own unique experience and interpretation of the strange sensations in my broken body.
But I must add a disclaimer…
‘Who really knows’ what is what or why and which is from what?
Does it always truly matter anyway?
I have come to see and learn that this is a big part of medicine itself – hypothesis, analysis, deliberation & discovery. Sometimes the evidence does provide an explanation. Sometimes we are left with only theory and wonderings. Especially in conditions that are poorly understood, recognised or researched – like mine are.
VIDEO 1: APRIL 2022 -12 BIZARRE ARACHNOIDITIS & CSF PRESSURE SYMPTOMS – Including my Covid and holiday flight experiences
In this video I discuss twelve of my most prominent – but bizarre – daily symptoms. I also seem to suffer with some high intracranial pressure issues these days as well as possible low pressure – but it’s confusing as to which is which and after 8 years of suffering since my accident (a ladder fall). So all I am really clear on – is that my whole intracranial pressure system is completely dysfunctional and unbalanced in many ways.
I also update on my case including: Having Covid in March 2022 and flying to Mallorca (2 1/2 hr flight) for a family holiday in April 2022.
Video content Summary:
1:40 – Having Covid March 2022
4:23 – Family holiday to Mallorca Spain including flight
7:50 – 1.I have felt drunk for seven years
9:19 – 2.I usually feel weird: pressure & pain
10:48 – 3.Stiffness, stuckness & pulling sensation in my spine (11:48 Tarlov Cysts)
12:09 – 4.Sitting down aggravates all my symptoms & legs go numb
14:17 – 5.When I sit I am better leaning forward on hard chairs or with a wedge cushion
16:50 – 6.Standing in one position too long makes me feel really ill
18:25 – 7.I constantly feel compelled to move around
20:35 – 8.I get headaches & feel groggy in the nights & in the morning
22:09 – 9.My skin often has crawling pins & needles sensation
24:00 – 10.Going for a wee makes my head worse
25:54 – 11.My head is very hypersensitive to any ICP (Intracranial Pressure) changes
27:52 -12.My eyes & brain are supersensitive to lights & moving images
VIDEO 2: FEBRUARY 2023 – 12 MORE BIZARRE ARACHNOIDITIS & CSF PRESSURE SYMPTOMS: Including a case update
In this video I discuss twelve more of my most prominent – but bizarre – daily symptoms.
Video content Summary (sorry some of the numbers got mixed up):
2:58 – Case Update
5:12 – Current Meds
6:14 – Walking still helps
7:56 – 12 More Bizarre Symptoms intro
8:32 – 1. Hypersensitivity to stress & intense emotion
11:10 – 2.Feeling like I have a clamped steel rod in my spine
12:16 – 3.Stiffness & pulling in my neck
13:46 – 5.Crouching really flares my symptoms
16:49 – 6 Speed bumps make me feel really ill
18:32 – (4)Moving images makes me feel really sick
19:20 – 7.Hypersensitivity to noise
20:33 – 8.My ears regularly crackle & pop
21:52 – 9.Bladder urgency & retention
23:20 – 11.Have to carry bags into me
25:14 -12.Lie on my side with pillows
26:00 – (10)Log roll in and out of bed to protect spine
So there is another 24 of my strange – often bizarre – symptoms. Most of which have always been there the whole 8 years. Others which have developed or at least worsened over those years. It is by no means an exhaustive list. So maybe sometime I will add some more…
For instance I could mention how the sensation / neuropathy issues in my feet have gotten somewhat worse. How I can no longer tolerate walking bare foot or with just socks on around the house. How the sensation is both impaired yet also gives me differing levels of pain & discomfort. Or I could tell you about having to choose what I wear carefully. How certain clothes, fabrics or styles are hard to tolerate on my hypersensitive skin these days. Or finally I could lament the fact that my body is often hypersensitive to pain and touch. This gets acute in a flare – but to a certain extent it’s constantly there.
But for now 24 is more than enough to welcome you into my daily world.
And I will finish by asking – what about you?
Some of you have already responded and commented and I appreciate that so very much. I am always very willing to listen and learn from your own experiences too. Can you relate to my descriptions – even if your case is worse – or even milder than mine? Please do comment or reply so that we can all continue to learn together.
For together always has more strength than standing and speaking alone.
Even the weak become strong when they are united.
– Friedrich von Schiller
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
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
“Life can only be understood backwards; but it must be lived forwards.” – Søren Kierkegaard
It’s now over seven years since I got ill.
Seven years… it’s such a long time right?
I never imagined seven years ago the way our lives would be so altered in one day.
In hindsight I don’t see the accident as the only culprit for these life altering diagnosis. Yes, the fall seemed to be the trigger. However, the more I have understood the conditions and my potential biological predispositions. The more I realise that it may well have been an injury waiting to happen. And if not THAT day and that fall…
It would perhaps have been another day, another trigger, that created a similar ‘explosion’ of symptoms, a leak, of an arachnoid inflammatory response.
I do have multiple thoracic micro bone spurs in my spine pressing into my dura (that holds my spinal fluid). As seen on a thoracic CT. So it was probably always going to be a risk that one day one might penetrate the dura. Or if not the bone spurs… maybe a spinal cyst (of which I have many) or some other dural weakness.
So as the quote above says … we DO often understand better backwards. Hindsight is often a great revealer – we often see things with more clarity the further on we go! And that can really help – so long as we don’t get stuck in that past, in the memories we can’t change, in the moments now passed. Instead we must choose to accept what has happened, attempt to reframe it and find the best way forward we can…
Despite it! Despite it all.
So that’s what I – what we – have chosen to do.
And embrace the life we have!
I have been meaning to write this blog update for a while. Well at least since I made these last two videos for my YouTube channel. The firstone I published in January is with my husband Matt and was a reflection on seven years since my original accident (a ladder fall) and trigger for the spinal CSF leak & arachnoiditis. The second video was a slightly longer video documenting how I manage my daily arachnoiditis & CSF flow/ intracranial pressure issues.
To make the videos easier to navigate I have included a breakdown summary in the video info section on YouTube. I will add a record of the video summary’s here. To to be able to skip to different parts you will need to view the video on YouTube directly by clicking on the YouTube link and take a look at the info section below the videos.
SEVEN YEARS SINCE MY ACCIDENT – A Reflection With My Husband
A reflective discussion with my husband Matt Hill about the challenges and positives of the past seven years since my ladder fall and development of a spinal CSF leak and arachnoiditis.
Summary of my accident and diagnosis. 1:00 min
1. What’s been one of the hardest parts of the last seven years? 2:18
2. What has been one of the positives of such a difficult journey? 7:00
3. What advice would you give to other spouses/ partners/ family members in this kind of situation? 9:30
MANAGING MY ARACHNOIDITIS – How I Manage My Daily Symptoms
This video is an update on my arachnoiditis/ mild adhesive arachnoiditis (AA) and how I manage to ongoing daily symptoms. I have not had a major flare in over a year but I do have many ongoing daily symptoms I have to micro-manage throughout the day to get the most out of my time.
Here is a breakdown of content you can skip to in video info on YouTube. The numbers signify number of minutes into the video:
0:28 Seven years of arachnoiditis/ mild AA
1:16 Current medication
1:57 Vitamins/ supplements/ diet
2:08 Walking physio
2:32 When people ask: How are you doing?
4:09 What does it feel like to have arachnoiditis/AA/ Spinal CSF Leak (active or in recovery)?
5:18 How did my fall cause arachnoiditis?
6:49 What does the arachnoiditis pain feel like?
9:49 CSF/ Spinal fluid flow issues
11:24 Standing is normally a better position for me
12:46 Higher Intracranial pressure (ICP) issues/ symptoms – common to those with arachnoiditis/ tarlov cysts and post spinal CSF leak
15:02 Problems with focus & concentration
18:33 How about driving a car?
19:07 Do I ever feel normal?
21:09 Do I have fears for the future?
I hope that the videos are helpful to others out there with both spinal CSF leaks / arachnoiditis or any other physical or mental health condition. It really is not at all easy navigating such conditions which is one of the reasons I choose to share my story. As you will see and have read previously, I am very blessed and privileged to have a very supportive husband, family and wider support network in our church and other supportive friends – both around me and online.
I really do believe we need others to make it through the immense challenges of these conditions.
So if you do feel alone today I would really recommend trying to find others to connect to – both around you or online through support groups. There are many groups available via Facebook groups, Twitter and other forums. Please don’t stay isolated if you do need support.
…And please don’t stay silent either.
Talking or writing really can help. Whether you show others or not. I am in a privileged position to be able to share my story publicly – others are not. But I hope that even when you can’t ‘find the words’ that my words might connect with you. So that you know you really are not alone. There are others – some better off and others worse off than you. Across the world many others are trying to find their way through dealing with and managing these conditions and their devastation on our lives.
I am thankful that in 2022 we have the internet to help us find one another so that our collective experience and voice might become even more powerful and increasingly louder – until more people are reached, understood and helped – both medically and holistically. So please do share my story with anyone who might listen – if you think it will help you and the cause in general.
Compassion and advocacy starts with you, and I, telling our stories and hoping that through them others might well be saved some of the additional pain we have had to face. We will then realise more and more that we face these awful illnesses TOGETHERand together we are surely so much stronger than trying to fight alone.
“Sit with hurting people. Offer them your presence. Show them you’re connecting to their pain. Listen to what they need. Weep with them. It won’t make them feel worse; it will make them feel welcomed into communion with you.” – Katherine & Jay Wolf
“My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever.” -Psalms 73:26 NLT
“Hope is being able to see that there is light despite all of the darkness.”
Today I want to write about HOPE, because hope is one of the strongest forces that can guide us through immensely dark seasons. Love is always the power that truly drives all I do. But hope brings energy to keep on going even when its presence is only the flicker of a flame in the darkest of nights.
”It’s always something, to know you’ve done the most you could. But, don’t leave off hoping, or it’s of no use doing anything. Hope, hope to the last.”
Today I am writing to remind you & myself that hope always lives & always remains even when everything appears hopeless. At those times we can often only see unending disaster & pain. Which can feel completely overwhelming to endure. But when we find hope we discover little rays of light that begin to glimmer & shine in the midst of the darkness.
So today I hope you will join with me and choose to HOPE again. In whatever area of life feels hopeless to you at the moment – I pray that you will find the energy to...
This is my ongoing story since that time. My real life story that reminds us that sometimes hope surprises us when we chose to stay the course. Sometimes it turns things around in ways we never imagined or expected. If we will just hold on hope can bring better days again.
Summary of My Ongoing Progress
In general, it’s been mainly good news regarding ongoing progress in my recovery since the new (but old) diagnosis of chronic arachnoiditis.There have been some great results over time from my new ongoing treatment protocol to reduce spinal canal nerve/ arachnoid inflammation & help to ease the pain of the damage already done. This includes various medications and a personal physio plan of continuing to walk a few miles a day over 2-4 separate walks and gently stretching my spine regularly.
Successful treatment has meant that I am now managing to be upright and do things for stretches of on average 10-12 hours at a time before I need to lie down to rest.I can then get up and do even more after 1-2 hours rest.
Which is massive progress because during the year following April 2019 (my last bad relapse/ flare) and my hospital admission after actuely relapsing in July 2020 – I could only manage a maximum of 4 hours upright in one go – normally only 2-3 hours max. I then needed at least 2 hours lying down flat before getting up for maybe 2 hours again, and that was how my whole day went! So all the very high levels pain and debilitating head pressure issues are much improved since I had the IV steroids (methlyprednisolone) in hospital and then continued under an arachnoiditis treatment protocol. My walking is also much stronger and generally good and my mental clarity much improved so I can do a lot more in the day at home & for our church as well as maintain a helpful walking routine.
Combination of Medications that Help
I continue to take 5mg prednisolone (steroid) every other day and 75mg diclofenac (anti-inflammatory that crosses the blood-brain barrier into the spinal canal) the day in between. I also take 4.5ml a day of LDN (Low Dose Naltrexone) as recommended by a US specialist & other arachnoiditis suffers. (This is not available on the NHS for arachnoiditis but prescribed & purchased privately from a registered LDN trust clinic. Although my GP & Neurologist have been informed I am taking it). I also take Omeprozole 20mg to protect my stomach and some other supplements including Pregnenalone to help nerve regeneration, Turmeric capsules for inflammation, Omega 3, calcium to protect my bones, vitamin B complex, magnesium & vitamin D.
Intracranial Pressure Headache Improvement
Interestingly, what we previously assumed were classic low pressure/ spinal CSF leak positional symptoms have greatly improved too with the treatment. Which suggests the arachnoiditis inflammation was probably more of a problem on that level than we all previously realised. Which is perhaps good news for other patients that might improve on medication and with more walking and gentle stretching too. IF they could have an arachnoiditis/ spinal canal inflammation element to their ongoing symptoms.
Much Less Debilitated
The main positive thing that has changed since the new diagnosis and treatment is that I am currently much less debilitated and do not need to lie down much at all. I can also manage a lot of the pain & symptoms better – by keeping moving, regular long walks, lying down when the pain and head pressure gets too much, being quiet for a bit… and in the meantime I can do & achieve a lot more as I said above, especially as my mental clarity is much better than it was.
Summary of Recent Improvements
So the never-ending battle continues but 2020 brought new gains that I never imagined could come without more invasive procedures. That experience this year has been something of a miracle in our lives. My husband feels that I am currently the best I have been in the whole nearly 6 years… and I would probably agree with him in many ways. Although there are elements of the lower spinal pain and stiffness that are perhaps worse than other times on my journey.
The Freedom Found in a New Perspective
I think understanding the new diagnosis helps a lot too with management and mentally/ psychologically dealing with it all.It really has been very liberating to understand some more of my strange symptoms & behaviour over the past six years better in hindsight. This is why seeking out more answers can be so helpful to patients like me. Especially those with rare conditions – because it helps you to understand yourself better & gives more explanations for why you sometimes act and respond in the ways that you do. Which is so helpful for your holistic health.
I really do believe in cases of rare illnesses that there needs to be more doctor & patient partnership in understanding new diagnosis. Doctors often do not have the time to fully research and understand more unusual conditions. But if patients and doctors can choose to more humbly learn together then that can help everyone. This is especially true in our newer age of the internet and online support groups. Patients often have the time to research, learn & explore things doctors just don’t have the time for when they meet very few patients with those conditions. This subsequently means that listening doctors can then help a patient understand it all better too, because patients often lack the wider knowledge of medical complexities that doctors are much better placed to help them understand.
In my own story I am still immensely grateful for every doctor who has had the humility to patiently listen carefully and to think outside of ‘normal boxes’ to help very unique patients like me hopefully discover more answers to unique questions about their medical conditions. Those doctors are very precious to us, especially when they help us over the long term so get to know you a bit more personally too.
Radiological Evidence of Arachnoiditis
We have at least made some progress on this level since my last blog article too.My scans have been looked at by a few different doctors now including neuroradiologists, neurologists, a neurosurgeon & an arachnoiditis specialist. The conclusions coming from all avenues is that there are various ‘suggestive features’ of arachnoiditis as well as some possible mildly Adhesive Arachnoiditis (AA) elements on my MRIs. This includes my lumbar spinal nerves being situated more towards the side and back of my spinal canal (first seen in retrospect on my first March 2015 MRIs which would support my theory that a biological predisposition as well as the fall and leak were the trigger – because those scans were done before I had had any spinal procedures). As well as some possible areas of mild clumping & nerve adhesions forming & some inflammation of the cauda equina nerve roots.
This is all actually all very in line with a diagnosis of chronic arachnoiditis. It is usually a clinical diagnosis based mainly on symptoms, but over time people will often display suggestive features of spinal nerve/ nerve root inflammation, swelling and positional shifting, which may also cause spinal cysts forming (incl. tarlov, arachnoid or similar cysts – as I have). Patients may also begin to show some suggestive, possible or probable mild nerve root clumping and adhesions evident on their MRIs etc.
Clinical Rather than Radiological Diagnosis
It has been reported to me that I have enough suggestive features of all of these elements to help support the clinical diagnosis of arachnoiditis.Although not enough to support a radiological diagnosis of adhesive arachnoiditis or cauda equina inflammatory disorder.
These findings are also in line with my own experiences of treatment. I had previously read that the steroid & anti-inflammatory meds will only really work on those in earlier stages of illness progression. So my radical response to both the IV steroids given in hospital in July/ August 2020 (500mg IV methlypredisolone a day over 5 days), the subsequent steroid taper and taking anti-inflammatories, in addition to lots of walking & some gentle stretching would support the theory that the arachnoiditis is present and potentially dangerous to me, but it has thankfully not yet advanced to a more severe permanent type of adhesive arachnoiditis.
This supports my theory that we may well have thankfully stopped a more ‘adhesive episode’ taking hold this summer. I really was extremely unwell and in unimaginable levels of pain in my lumbar & sacral spine and legs. Which without treatment could have well done more permanent damage to my spinal nerves – had we not halted its progression through aggressive treatment.
Arachnoiditis and especially AA can progress very quickly when it severely flares. This is why it’s of paramount importance that people are diagnosed & treated via a clinical diagnosis before it is so serious that it is more evident on MRIs.
Treatment will always work best BEFORE the damage has become permanent & radical enough to clearly show on scans. Specialists also tell us that scan evidence does not always correspond with symptom severity anyway. As with a lot of other conditions like spinal CSF leaks.
So the earlier it is treated the better. Ongoing treatment can also help to halt progression through flares.Which is of great value to me and other sufferers of this awful misunderstood condition. Knowing how to treat it can potentially stop devastating, irreversible damage to people’s spines and whole nervous systems.
Despite all the improvements – for which I am incredibly thankful – the reality is also that I believe I still have permanent damage to my spine from the arachnoiditis/ leak – because chronic pain is a normal significant daily part of my life. It is just much more contained than it used to be. This again would align with what is being seen on my MRIs.
CHRONIC NEURO PAIN IN MY SPINE & HEAD
It often feels like a ‘carpet burn’ sensation – like when the top layer of skin has been gashed off – but deep in my lumbar/ sacral spine and upper neck in particular. Or definite nerve pain and pressure flares in my spine & head. Sometimes that builds to more pin’s sticking into me/ stabbing pain. It also means my spine is very stiff which also leads to a lot of leg stiffness & leg pain too. Although lots of walking helps this. Also various movements such as bending, lifting, twisting, straining make all this worse.
PINS & NEEDLES
I also get regular intermittent pins and needles/ buzzing in & all over my legs and feet & sometimes in my hands and other places. I understand what people mean by saying it feels like ‘bugs crawling on you or under your skin’ (paraesthesia) but to me it’s distinctly pins & needles – but it’s like a buzzing that pulsates and moves about on the inside of my legs and all over the surface of my skin. Thankfully it has improved a lot on how it was during my last ‘flare’. These days it’s more annoying than debilitating and thankfully my feet no longer ‘burn’ like they did in the summer.
I HAVE TO KEEP MOVING: ‘RESTLESSNESS’
A key ongoing symptom feature for me (that I have heard is very typical of arachnoiditis) is that remaining sitting and standing in one position for too long exacerbates my all my symptoms, including spinal & head pain, leg stiffness, pins & needles and the feeling of pressure in the back of my head, whole head and upper neck which leads to more fogginess and sometimes even very bad nausea or hot flushes. I have often recently wondered if this is partly a CSF flow issue– as once I start moving around again or walking – it improves. The sensation is that my intracranial pressure builds in my upper neck & whole head – but it improves through gentle movement. Even lying down for a while can cause this to happen. The minute I get up my legs are all stiff and weak and my ears pop from the pressure changes.
What this means is that I can begin to feel very agitated and distracted if I have to stay in one position for a long time. This could be read by others to be an anxiety issue or simply a deep restlessness. But I now know it’s mainly simply a typical symptom of arachnoiditis, due to build up of pain and discomfort to high levels and the body’s natural reactions to that pain and discomfort in my spine, legs & head. As the video explains well.
CSF FLOW & PRESSURE ISSUES
This would tie in with various arachnoiditis specialist’s theories about CSF flow issues and high intracranial pressure problems related to arachnoiditis. On that level I have wondered if it’s possible that the small leak that has been identified in my ventral cervical (in my neck) spine by my NHS Intracranial Pressure MDT could possibly help regulate my pressure rather than distinctly making things worse and causing typical low pressure symptoms. Which I guess could tie into my cranial scans never actually showing low pressure/ SIH.
It may also explain some of my confusing symptoms that at times over the past 6 years have completely baffled neurologists as to whether it was low pressure, high pressure or another headache type or combination. I do often wake up with a headache or at least a ‘pressure filled head’- in the night or early in the morning and I especially struggle with very weak & stiff legs and a ‘full head’ if I have to get up in the night or early morning for the loo.
Although the CSF flow and pressure theories are mainly based on my own observations of my symptoms – I don’t really know the truth of it all of course. I have come to believe it’s all FAR more complex than my doctors & I perhaps previously realised regarding CSF / ICP / arachnoiditis links. Which again would make much more sense of my own medical journey over the past six years. Arachnoiditis is known to both sometimes increase intracranial pressure, but is also known to cause you to leak or seep spinal fluid too. So that again explains more about why my intracranial pressure dynamics are often all over the place & may well continue to be pretty messed up long term. Which would also tie into my general hypersensitivity to any pressure changes. Although again all these things have currently improved to less debilitating levels since treating the arachnoiditis which shows how interlinked it all is with the inflammationas well.
STRUGGLES WITH SITTING DOWN
Thankfully I can sit for much longer than I could – but only either with a very straight spine or leaning slightly forward. Although it is never a comfortable position for me and will make my head and spine pain & pins & needles worse especially after a 30mins to one hour or so. I can also feel very sleepy and nauseous after a while sitting which can makes me yawn obsessively (I again think it’s an ICP increase thing). So I again often have regular ‘getting up breaks’ when sitting alot. I will also be extremely stiff when I get up and have to get my legs moving quickly to get them working properly again.
Travelling sitting in a car is particularly bad for me too. If I travel in the car or drive I sit in a very strange position with the seat really far forward and very straight or slightly leaning forward. I have also invested in a ‘wedge cushion’ to use if a passenger – to help align my spine better in the ‘bucket’ type seats, which seems to help. Bucket seats are known to be very bad for arachnoiditis/ AA sufferers.
ONGOING PHONOPHOBIA & PHOTOPHOBIA
My head is still very sensitive bright and flashing lights, fast moving images & to the layering of sounds. I still struggle with lots of noise at the same time. Like music with a beat, or music in the background with talking, or a combination of other general noises. The music I listen to these days tends to be quiet & acoustic and I usually listen with headphones in my ears to block out some of the other sounds. But all this is much better than it has been for a long time and this Christmas I have been able to tolerate flashing lights much better than in previous years.
TALKING WHILST WALKING
Talking & walking is much better for me now which has been helpful when it’s one of the only ways to see people during the pandemic restrictions. But sometimes it’s still a bit of challenge especially if my head is already a bit flared. One of my worst movements whilst walking is attempting to turn my head to look at things or to talk to someone. That will immediately fill my head with pressure, make it cloudy and cause a lot of pain and pressure in my upper neck. The same thing happens moving my neck to look up or down. So my key is to walk with my head facing forward and my spine very straight.
I love to sing, especially with my husband, but singing has often been a key test of how bad my symptoms are since my accident. At their worst I cannot sing (or hardly speak) at all. Even during the first half of 2020 (pre-arachnoiditis diagnosis) my husband and I would often sing for our online church since the pandemic closed church buildings. But I would have to practice lying down then would only get up to record or live stream. But since my new treatment plan I can also sing more. A good example being our recording of Oh Holy Night for our Online Carol Service. I have not been able to properly sing this carol for the past five years especially because of how high it goes at the end. Normally singing that high would cause my head to full with pressure, make me feel drunk & cause me to need to lie down. But to our joy this year I managed to record this at home & this was actually done after a number of practices & a couple of takes – so that has been some encouraging progress.
GOING TO THE LOO
Going to the loo still a problem for my head & bladder. It still feels like either my pressure is increasing or I am quickly losing spinal fluid as I wee – as my head almost immediately feels very strange, full of pressure & my ears will often pop more showing a quick clear pressure change (like happens on a flight). It is also still often uncomfortable on my urinary tract which will still feel a bit irritated for a while before and after I have been. But it’s all much better than it has been in a while & especially in the summer. Previously I could often only go for a wee directly before lying down. Emptying my bowels also makes my head worse especially if there is any straining at all – which I avoid at all costs. Straining is not at all good for leaks or arachnoiditis.
MOVING FORWARD INTO A DIFFERENT SEASON
So it’s a mixed picture of massive gains made in the second half of this year, combined with a reality of continuing to manage many ongoing symptoms.
However, for the first time in a long time I have made much more progress & found many ways to stay busy & occupied within all my limitations. This has included helping the shift to more online church through video creating, editing and social media & website development. These are all things I can do, as and when I can, standing, sitting or lying down, either on my smart phone or for shorter bursts on the laptop. I also continue to help provide pastoral support – alongside my husband – for people in our church & connected to us. Although even a lot of this has had to shift online or over the phone this past pandemic year.
“The real work, the hardest work, is to pick up the pieces and decide how to put them back together again. The new thing that emerges may not work the way it used to, but it can bend and stretch and change us in ways we come to treasure even more.”
Suffer Strong – Katherine & Jay Wolf
That quote is precious to me because it describes my journey well. The past six years have been a marathon journey of learning to accept, adapt, stretch, bend & change according to my current abilities & limitations. My life journey since my accident has in no way been linear. Sometimes it’s been as changeable as shifting sands. Just when you get used to being able to do even more – you again simply crash, burn & relapse.
In those times of disappointment, in those moments I wasn’t sure I had the energy to start another recovery journey again, I found that I had to find ways to acknowledge the grief & pain but then allow myself to bend, change & be moulded anew. In those places I had to let go of finite disappointments & focus on…
A bigger Picture. A bigger Person. A bigger Presence.
… to carry me through.
Until, yet again I have found myself in the more peaceful place of slightly calmer waters. Having let go of who I once was and embracing the life I have been given now. Whilst choosing to allow it to be used to be a blessing & make a difference in others lives.
So that is the infinite hope that I cling fast to. A hope that is not based on the life I imagined, but is based on something far more significant. The the life I was given to live. So I must embrace all that it is – and attempt to use it for good. To make the difference in our world that only I can make. Reaching the people that I was uniquely called to love. And trying to offer hope to others overwhelmed by hopelessness.
Part of that process is continuing the task of simply telling my complicated never ending story – in the hope that it may become a ray of hope in someone else’s darkness. So today I want to tell you again to never give up. Instead choose to…
“Hope, hope to the last.”
Remembering that good can come again in our lives… IF we will only keep holding on and enduring for another day, another difficult season. However impossible that sometimes may feel.
“We must accept finite disappointment, but never lose infinite hope.”
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.
“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.