“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.”Charles Dickens
Today I am writing to remind you & myself that hope always lives & always remains even when everything appears hopeless. At those times we can often only see unending disaster & pain. Which can feel completely overwhelming to endure. But when we find hope we discover little rays of light that begin to glimmer & shine in the midst of the darkness.
So today I hope you will join with me and choose to HOPE again. In whatever area of life feels hopeless to you at the moment – I pray that you will find the energy to...
Hope, hope to the last.
Six Years of struggle
It’s six years ago this week that I fell from a small step ladder whilst painting & my life took what seemed like a major detour into a long term neurological nightmare. In early 2015 I was diagnosed with a concussion, then post-concussion syndrome, then a spinal CSF leak/ low pressure headaches. However, it wasn’t until the summer of 2020 that I was also diagnosed with arachnoiditis during one of my worst flares/ relapses I have ever had – as I wrote about in ‘Butterflies in the Dirt & A New Diagnosis.‘
This is my ongoing story since that time. My real life story that reminds us that sometimes hope surprises us when we chose to stay the course. Sometimes it turns things around in ways we never imagined or expected. If we will just hold on hope can bring better days again.
Summary of My Ongoing Progress
In general, it’s been mainly good news regarding ongoing progress in my recovery since the new (but old) diagnosis of chronic arachnoiditis. There have been some great results over time from my new ongoing treatment protocol to reduce spinal canal nerve/ arachnoid inflammation & help to ease the pain of the damage already done. This includes various medications and a personal physio plan of continuing to walk a few miles a day over 2-4 separate walks and gently stretching my spine regularly.
Successful treatment has meant that I am now managing to be upright and do things for stretches of on average 10-12 hours at a time before I need to lie down to rest. I can then get up and do even more after 1-2 hours rest.
Which is massive progress because during the year following April 2019 (my last bad relapse/ flare) and my hospital admission after actuely relapsing in July 2020 – I could only manage a maximum of 4 hours upright in one go – normally only 2-3 hours max. I then needed at least 2 hours lying down flat before getting up for maybe 2 hours again, and that was how my whole day went! So all the very high levels pain and debilitating head pressure issues are much improved since I had the IV steroids (methlyprednisolone) in hospital and then continued under an arachnoiditis treatment protocol. My walking is also much stronger and generally good and my mental clarity much improved so I can do a lot more in the day at home & for our church as well as maintain a helpful walking routine.
Combination of Medications that Help
I continue to take 5mg prednisolone (steroid) every other day and 75mg diclofenac (anti-inflammatory that crosses the blood-brain barrier into the spinal canal) the day in between. I also take 4.5ml a day of LDN (Low Dose Naltrexone) as recommended by a US specialist & other arachnoiditis suffers. (This is not available on the NHS for arachnoiditis but prescribed & purchased privately from a registered LDN trust clinic. Although my GP & Neurologist have been informed I am taking it). I also take Omeprozole 20mg to protect my stomach and some other supplements including Pregnenalone to help nerve regeneration, Turmeric capsules for inflammation, Omega 3, calcium to protect my bones, vitamin B complex, magnesium & vitamin D.
Intracranial Pressure Headache Improvement
Interestingly, what we previously assumed were classic low pressure/ spinal CSF leak positional symptoms have greatly improved too with the treatment. Which suggests the arachnoiditis inflammation was probably more of a problem on that level than we all previously realised. Which is perhaps good news for other patients that might improve on medication and with more walking and gentle stretching too. IF they could have an arachnoiditis/ spinal canal inflammation element to their ongoing symptoms.
Much Less Debilitated
The main positive thing that has changed since the new diagnosis and treatment is that I am currently much less debilitated and do not need to lie down much at all. I can also manage a lot of the pain & symptoms better – by keeping moving, regular long walks, lying down when the pain and head pressure gets too much, being quiet for a bit… and in the meantime I can do & achieve a lot more as I said above, especially as my mental clarity is much better than it was.
Summary of Recent Improvements
So the never-ending battle continues but 2020 brought new gains that I never imagined could come without more invasive procedures. That experience this year has been something of a miracle in our lives. My husband feels that I am currently the best I have been in the whole nearly 6 years… and I would probably agree with him in many ways. Although there are elements of the lower spinal pain and stiffness that are perhaps worse than other times on my journey.
The Freedom Found in a New Perspective
I think understanding the new diagnosis helps a lot too with management and mentally/ psychologically dealing with it all. It really has been very liberating to understand some more of my strange symptoms & behaviour over the past six years better in hindsight. This is why seeking out more answers can be so helpful to patients like me. Especially those with rare conditions – because it helps you to understand yourself better & gives more explanations for why you sometimes act and respond in the ways that you do. Which is so helpful for your holistic health.
I really do believe in cases of rare illnesses that there needs to be more doctor & patient partnership in understanding new diagnosis. Doctors often do not have the time to fully research and understand more unusual conditions. But if patients and doctors can choose to more humbly learn together then that can help everyone. This is especially true in our newer age of the internet and online support groups. Patients often have the time to research, learn & explore things doctors just don’t have the time for when they meet very few patients with those conditions. This subsequently means that listening doctors can then help a patient understand it all better too, because patients often lack the wider knowledge of medical complexities that doctors are much better placed to help them understand.
In my own story I am still immensely grateful for every doctor who has had the humility to patiently listen carefully and to think outside of ‘normal boxes’ to help very unique patients like me hopefully discover more answers to unique questions about their medical conditions. Those doctors are very precious to us, especially when they help us over the long term so get to know you a bit more personally too.
Radiological Evidence of Arachnoiditis
We have at least made some progress on this level since my last blog article too. My scans have been looked at by a few different doctors now including neuroradiologists, neurologists, a neurosurgeon & an arachnoiditis specialist. The conclusions coming from all avenues is that there are various ‘suggestive features’ of arachnoiditis as well as some possible mildly Adhesive Arachnoiditis (AA) elements on my MRIs. This includes my lumbar spinal nerves being situated more towards the side and back of my spinal canal (first seen in retrospect on my first March 2015 MRIs which would support my theory that a biological predisposition as well as the fall and leak were the trigger – because those scans were done before I had had any spinal procedures). As well as some possible areas of mild clumping & nerve adhesions forming & some inflammation of the cauda equina nerve roots.
This is all actually all very in line with a diagnosis of chronic arachnoiditis. It is usually a clinical diagnosis based mainly on symptoms, but over time people will often display suggestive features of spinal nerve/ nerve root inflammation, swelling and positional shifting, which may also cause spinal cysts forming (incl. tarlov, arachnoid or similar cysts – as I have). Patients may also begin to show some suggestive, possible or probable mild nerve root clumping and adhesions evident on their MRIs etc.
Clinical Rather than Radiological Diagnosis
It has been reported to me that I have enough suggestive features of all of these elements to help support the clinical diagnosis of arachnoiditis. Although not enough to support a radiological diagnosis of adhesive arachnoiditis or cauda equina inflammatory disorder.
These findings are also in line with my own experiences of treatment. I had previously read that the steroid & anti-inflammatory meds will only really work on those in earlier stages of illness progression. So my radical response to both the IV steroids given in hospital in July/ August 2020 (500mg IV methlypredisolone a day over 5 days), the subsequent steroid taper and taking anti-inflammatories, in addition to lots of walking & some gentle stretching would support the theory that the arachnoiditis is present and potentially dangerous to me, but it has thankfully not yet advanced to a more severe permanent type of adhesive arachnoiditis.
This supports my theory that we may well have thankfully stopped a more ‘adhesive episode’ taking hold this summer. I really was extremely unwell and in unimaginable levels of pain in my lumbar & sacral spine and legs. Which without treatment could have well done more permanent damage to my spinal nerves – had we not halted its progression through aggressive treatment.
Arachnoiditis and especially AA can progress very quickly when it severely flares. This is why it’s of paramount importance that people are diagnosed & treated via a clinical diagnosis before it is so serious that it is more evident on MRIs.
Treatment will always work best BEFORE the damage has become permanent & radical enough to clearly show on scans. Specialists also tell us that scan evidence does not always correspond with symptom severity anyway. As with a lot of other conditions like spinal CSF leaks.
So the earlier it is treated the better. Ongoing treatment can also help to halt progression through flares. Which is of great value to me and other sufferers of this awful misunderstood condition. Knowing how to treat it can potentially stop devastating, irreversible damage to people’s spines and whole nervous systems.
Despite all the improvements – for which I am incredibly thankful – the reality is also that I believe I still have permanent damage to my spine from the arachnoiditis/ leak – because chronic pain is a normal significant daily part of my life. It is just much more contained than it used to be. This again would align with what is being seen on my MRIs.
CHRONIC NEURO PAIN IN MY SPINE & HEAD
It often feels like a ‘carpet burn’ sensation – like when the top layer of skin has been gashed off – but deep in my lumbar/ sacral spine and upper neck in particular. Or definite nerve pain and pressure flares in my spine & head. Sometimes that builds to more pin’s sticking into me/ stabbing pain. It also means my spine is very stiff which also leads to a lot of leg stiffness & leg pain too. Although lots of walking helps this. Also various movements such as bending, lifting, twisting, straining make all this worse.
PINS & NEEDLES
I also get regular intermittent pins and needles/ buzzing in & all over my legs and feet & sometimes in my hands and other places. I understand what people mean by saying it feels like ‘bugs crawling on you or under your skin’ (paraesthesia) but to me it’s distinctly pins & needles – but it’s like a buzzing that pulsates and moves about on the inside of my legs and all over the surface of my skin. Thankfully it has improved a lot on how it was during my last ‘flare’. These days it’s more annoying than debilitating and thankfully my feet no longer ‘burn’ like they did in the summer.
I HAVE TO KEEP MOVING: ‘RESTLESSNESS’
A key ongoing symptom feature for me (that I have heard is very typical of arachnoiditis) is that remaining sitting and standing in one position for too long exacerbates my all my symptoms, including spinal & head pain, leg stiffness, pins & needles and the feeling of pressure in the back of my head, whole head and upper neck which leads to more fogginess and sometimes even very bad nausea or hot flushes. I have often recently wondered if this is partly a CSF flow issue – as once I start moving around again or walking – it improves. The sensation is that my intracranial pressure builds in my upper neck & whole head – but it improves through gentle movement. Even lying down for a while can cause this to happen. The minute I get up my legs are all stiff and weak and my ears pop from the pressure changes.
What this means is that I can begin to feel very agitated and distracted if I have to stay in one position for a long time. This could be read by others to be an anxiety issue or simply a deep restlessness. But I now know it’s mainly simply a typical symptom of arachnoiditis, due to build up of pain and discomfort to high levels and the body’s natural reactions to that pain and discomfort in my spine, legs & head. As the video explains well.
CSF FLOW & PRESSURE ISSUES
This would tie in with various arachnoiditis specialist’s theories about CSF flow issues and high intracranial pressure problems related to arachnoiditis. On that level I have wondered if it’s possible that the small leak that has been identified in my ventral cervical (in my neck) spine by my NHS Intracranial Pressure MDT could possibly help regulate my pressure rather than distinctly making things worse and causing typical low pressure symptoms. Which I guess could tie into my cranial scans never actually showing low pressure/ SIH.
It may also explain some of my confusing symptoms that at times over the past 6 years have completely baffled neurologists as to whether it was low pressure, high pressure or another headache type or combination. I do often wake up with a headache or at least a ‘pressure filled head’- in the night or early in the morning and I especially struggle with very weak & stiff legs and a ‘full head’ if I have to get up in the night or early morning for the loo.
Although the CSF flow and pressure theories are mainly based on my own observations of my symptoms – I don’t really know the truth of it all of course. I have come to believe it’s all FAR more complex than my doctors & I perhaps previously realised regarding CSF / ICP / arachnoiditis links. Which again would make much more sense of my own medical journey over the past six years. Arachnoiditis is known to both sometimes increase intracranial pressure, but is also known to cause you to leak or seep spinal fluid too. So that again explains more about why my intracranial pressure dynamics are often all over the place & may well continue to be pretty messed up long term. Which would also tie into my general hypersensitivity to any pressure changes. Although again all these things have currently improved to less debilitating levels since treating the arachnoiditis which shows how interlinked it all is with the inflammation as well.
STRUGGLES WITH SITTING DOWN
Thankfully I can sit for much longer than I could – but only either with a very straight spine or leaning slightly forward. Although it is never a comfortable position for me and will make my head and spine pain & pins & needles worse especially after a 30mins to one hour or so. I can also feel very sleepy and nauseous after a while sitting which can makes me yawn obsessively (I again think it’s an ICP increase thing). So I again often have regular ‘getting up breaks’ when sitting alot. I will also be extremely stiff when I get up and have to get my legs moving quickly to get them working properly again.
Travelling sitting in a car is particularly bad for me too. If I travel in the car or drive I sit in a very strange position with the seat really far forward and very straight or slightly leaning forward. I have also invested in a ‘wedge cushion’ to use if a passenger – to help align my spine better in the ‘bucket’ type seats, which seems to help. Bucket seats are known to be very bad for arachnoiditis/ AA sufferers.
ONGOING PHONOPHOBIA & PHOTOPHOBIA
My head is still very sensitive bright and flashing lights, fast moving images & to the layering of sounds. I still struggle with lots of noise at the same time. Like music with a beat, or music in the background with talking, or a combination of other general noises. The music I listen to these days tends to be quiet & acoustic and I usually listen with headphones in my ears to block out some of the other sounds. But all this is much better than it has been for a long time and this Christmas I have been able to tolerate flashing lights much better than in previous years.
TALKING WHILST WALKING
Talking & walking is much better for me now which has been helpful when it’s one of the only ways to see people during the pandemic restrictions. But sometimes it’s still a bit of challenge especially if my head is already a bit flared. One of my worst movements whilst walking is attempting to turn my head to look at things or to talk to someone. That will immediately fill my head with pressure, make it cloudy and cause a lot of pain and pressure in my upper neck. The same thing happens moving my neck to look up or down. So my key is to walk with my head facing forward and my spine very straight.
I love to sing, especially with my husband, but singing has often been a key test of how bad my symptoms are since my accident. At their worst I cannot sing (or hardly speak) at all. Even during the first half of 2020 (pre-arachnoiditis diagnosis) my husband and I would often sing for our online church since the pandemic closed church buildings. But I would have to practice lying down then would only get up to record or live stream. But since my new treatment plan I can also sing more. A good example being our recording of Oh Holy Night for our Online Carol Service. I have not been able to properly sing this carol for the past five years especially because of how high it goes at the end. Normally singing that high would cause my head to full with pressure, make me feel drunk & cause me to need to lie down. But to our joy this year I managed to record this at home & this was actually done after a number of practices & a couple of takes – so that has been some encouraging progress.
GOING TO THE LOO
Going to the loo still a problem for my head & bladder. It still feels like either my pressure is increasing or I am quickly losing spinal fluid as I wee – as my head almost immediately feels very strange, full of pressure & my ears will often pop more showing a quick clear pressure change (like happens on a flight). It is also still often uncomfortable on my urinary tract which will still feel a bit irritated for a while before and after I have been. But it’s all much better than it has been in a while & especially in the summer. Previously I could often only go for a wee directly before lying down. Emptying my bowels also makes my head worse especially if there is any straining at all – which I avoid at all costs. Straining is not at all good for leaks or arachnoiditis.
MOVING FORWARD INTO A DIFFERENT SEASON
So it’s a mixed picture of massive gains made in the second half of this year, combined with a reality of continuing to manage many ongoing symptoms.
However, for the first time in a long time I have made much more progress & found many ways to stay busy & occupied within all my limitations. This has included helping the shift to more online church through video creating, editing and social media & website development. These are all things I can do, as and when I can, standing, sitting or lying down, either on my smart phone or for shorter bursts on the laptop. I also continue to help provide pastoral support – alongside my husband – for people in our church & connected to us. Although even a lot of this has had to shift online or over the phone this past pandemic year.
“The real work, the hardest work, is to pick up the pieces and decide how to put them back together again. The new thing that emerges may not work the way it used to, but it can bend and stretch and change us in ways we come to treasure even more.”Suffer Strong – Katherine & Jay Wolf
That quote is precious to me because it describes my journey well. The past six years have been a marathon journey of learning to accept, adapt, stretch, bend & change according to my current abilities & limitations. My life journey since my accident has in no way been linear. Sometimes it’s been as changeable as shifting sands. Just when you get used to being able to do even more – you again simply crash, burn & relapse.
In those times of disappointment, in those moments I wasn’t sure I had the energy to start another recovery journey again, I found that I had to find ways to acknowledge the grief & pain but then allow myself to bend, change & be moulded anew. In those places I had to let go of finite disappointments & focus on…
A bigger Picture. A bigger Person. A bigger Presence.
… to carry me through.
Until, yet again I have found myself in the more peaceful place of slightly calmer waters. Having let go of who I once was and embracing the life I have been given now. Whilst choosing to allow it to be used to be a blessing & make a difference in others lives.
So that is the infinite hope that I cling fast to. A hope that is not based on the life I imagined, but is based on something far more significant. The the life I was given to live. So I must embrace all that it is – and attempt to use it for good. To make the difference in our world that only I can make. Reaching the people that I was uniquely called to love. And trying to offer hope to others overwhelmed by hopelessness.
Part of that process is continuing the task of simply telling my complicated never ending story – in the hope that it may become a ray of hope in someone else’s darkness. So today I want to tell you again to never give up. Instead choose to…
“Hope, hope to the last.”
Remembering that good can come again in our lives… IF we will only keep holding on and enduring for another day, another difficult season. However impossible that sometimes may feel.
“We must accept finite disappointment, but never lose infinite hope.”– Martin Luther King, Jr
For more posts of my arachnoiditis diagnosis please see the arachnoiditis menu above.
ARACHNOIDITIS INFO: ‘Arachnoiditis – Taming the Most Painful Pain’ Dr Forest Tennant video and Suspecting & Diagnosing Arachnoiditis (J. Antonio Aldrete) and The Arachnoiditis Syndrome (Dr Sarah Smith)
A medical paper supporting the use of steroids in treating early stage arachnoiditis and in the prevention of further adhesive arachnoiditis: Immunotherapies in chronic adhesive arachnoiditis – A case series and literature review
For more previous posts about my story of living with a spinal CSF Leak (from before we understood the arachnoiditis element) please look at the subject heading on the menu bar above.
SPINAL CSF LEAK INFO: Here is a brilliant 2 min animation about Spinal CSF leaks. For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org. Please see this May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition.
8 thoughts on “ARACHNOIDITIS AND A SPINAL CSF LEAK: FINDING HOPE ON THE JOURNEY”
I too had a very similar journey and I know it’s hard when someone says have you done this or just have to try this?
If you haven’t explored tethered cord and or maybe craniocervical instability…. I really suggest you try looking into it. There’s only a few specialist in the Us that know what they’re doing, esp for EDS patients.
Best of luck and lots of spoons and love!
Hi Hannah, Thank you so much for your comment and taking the time to make a suggestion that might help me. I really appreciate it. As far as I know I do not have EDS – I am not at all hypermobile. But their are some key features of Marfan’s syndrome in my family so that could well be an inherited CTD. I believe now that my issues are very much explained by the arachnoiditis/ mildly adhesive arachnoiditis. (of which is showing on my MRIs). That seems to make sense of most things we didn’t understand before. But it’s worth staying open to other diagnosis all the same so thank you again for taking the time to comment. With love and best wishes, Becky x
Beck can you please contact me I need some advice
I’m 55 was fit and healthy up to 3 years ago
I fell off a fence 12ft
I have the same symptoms as you and I’m loosing hope
I am sorry to hear about your suffering Robert. I have replied to your email. I hope you find more answers soon.
Thanks for sharing your story Becky. There certainly needs to be more awareness, especially in the medical industry, regarding AA.
I’ve led a miserable existence for the past 25 years, clearly with AA. Misdiagnosed and untreated to this day. I was constantly told, “there is nothing wrong with you” until after yet another paraplegia episode I was finally sent for an MRI where they found a 22cm long cyst in my lumbar spine, no CSF communication whatsoever. That resulted in two lengthy rounds of surgery and three months in hospital. That was five years ago and the surgical report states numerous difficulties fenestrating the cyst due to numerous adhesions and calcification throughout the cyst, dura and cauda equina – clearly the AA caused the cyst yet the medical industry here can’t get past the ‘chicken before the egg’ thing. Yet still, no AA diagnosis or AA treatment! Here in Australia, unfortunately, there is a lot of rampant pride in our Specialists, we all know what the Lord has to say about that! I’ve done a lot of research into AA, I have all the symptoms and more, sadly to say. I’ve had to self diagnose and go to great lengths to convince my GP, yet I’m still under no preventative treatment. A few weeks ago I reached out to Dr Forrest Tennant who has since reviewed a number of my imaging and photos of physical symptoms. Unfortunately, because I’ve been neglected by the medical industry here, not only do I have AA, but it is in its advanced stage where much of the adhesions have calcified and I leak CSF into my circulatory system like a sieve, also from my ears and nose. Dr Tennant is a gift, may he be truly blessed! My journey goes on for the moment in my efforts to gain recognition for my treatment, and hopefully proper preventive treatment with the aim of prolonging some quality of life. As you no doubt know, CSF is toxic to ones organs. With that, and many of my nerves encapsulated by calcified adhesions, I have severe entropy so my future here on earth is not overly promising. With Dr Tennant’s Report hopefully I can gauge a lending ear and get some sort of preventative treatment which slows this disease, reduces pain, mitigates the ongoing incapacity and alleviates at least some of the fears my immediate family has by watching me go through this. Albeit, the Lord has a plan, I know I’m in His hands, and ultimately, I most definitely have the Hope you talk about. God bless you Becky for sharing your journey! David
I am so sorry to hear your incredibly difficult journey. That is such a long time of suffering with no help or support. It is awful when people suffer without the understanding and recognition of doctors. It adds to their suffering so much. I am so glad Dr Tennant could help you. He is such an incredible asset to us all. I really do pray that you can get the help & support that you need moving forward. Thank you for sharing your story here too … we can but hope our stories can help change things for others in the future. Even when we can’t always change our own situations. Although living with the conditions are very very hard especially when it is so advanced. 😔
Idk how I found this but I think maybe you just helped me big time. Thank you for writing this. Sincerely.
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I am glad it helped you! Thank you for taking the time to tell me.