“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”– Mother Teresa
At the end of January I had another horrendous relapse / flare of my arachnoiditis/ mild adhesive arachnoiditis & spinal CSF leak symptoms. Although I had experienced some pre-warnings in the weeks before, on Thursday 28th January my symptoms again exploded so acutely that I knew I needed to access another 5 day IV methylprednisolone ASAP, as previously agreed with my more local neurologist if that happened. It unfortunately still took a week to arrange for me to receive it at the local day case unit, especially as I really wanted to avoid going via the ED due to Covid and hospital pressures. It was also the first time of these arrangements being actioned which meant it took a little bit more time.
So as I waited at home as we and my wonderful GP team chased the hospital and my consultant to make arrangements for me ASAP, my husband and I made the decision to film what happens to me when I flare / relapse, and how I responded to treatment – as an open education and awareness project for other patients and their family and friends, as well as any doctors who may be open to listen and learn more about arachnoiditis and spinal CSF leaks.
We mainly decided to do this because when doctors, patients and the general public do not understand these conditions it causes us sufferers so many many problems in being ‘heard’ and accessing treatment. Also – as anyone can see from the videos when I am in a flare – things deteriorate dramatically in a week. Arachnoiditis/ AA flares should be treated as a MEDICAL EMERGENCY if doctors want to stop more permeant adhesions from forming – which could ultimately lead to paralysis, partial paralysis, incontinence and irretractable pain syndrome.
So I cannot stay silent!!
Without my IV steroid treatment, steroid taper and ongoing every other day 5mg prednisolone (steroid) and 75mg diclofenac (anti-inflammatory) & 4.5ml LDN (low dose Naltrexone via private prescription), I have no doubt the adhesive arachnoiditis would have moved into more severe categories over the last two flares.
It thus felt time to branch out into videos to complement my writing in this blog.
So I have a YouTube channel now packed full of educational videos showing my flare, talking about symptoms and how I have done in recovery since. I will keep updating my channel to talk about my progress or new things I am learning about that are relevant to the condition.
Here are some of the relevant videos and links:
Here are a few other videos from each section and a link to each ‘playlist’. All the individual videos can be found on my YouTube channel.
- 5 DAY IV STEROID 500mg METHYLPREDNISOLONE (with 2 day break over the weekend as day case unit shut) PLAYLIST. (6 videos)
- STEROID & ANTI-INFLAMMATORY TAPER PLAYLIST. (6 videos)
I will now add one or two key videos from each list here:
That should be enough videos to give someone more of an introduction to my new educational and awareness project. I have learnt a lot over the past six years about my two radiologically confirmed diagnoses, even though I only knew I had had arachnoiditis all along too since July 2020. (It can now be seen on my original 2015 MRI’s 3 months after my accident and before any of my spinal procedures. I also experienced symptoms of arachnoiditis as soon as my symptoms came on after my ladder fall in January 2015).
PLEASE NOTE: ALL MY VIDEOS & WRITING ARE FULLY IN THE PUBLIC REALM AND CAN BE SHARED IN ANY CONTEXT OR PLATFORM WITH MY FULL PERMISSION. MY ONLY DESIRE IS THAT PEOPLE LEARN FROM MY CASE SO THAT OTHERS DO NOT HAVE TO SUFFER SO VERY MUCH FOR 6 YEARS TO GET RADIOLOGICALLY CONFIRMED DIAGNOSIS. SO PLEASE DO SHARE THEM WIDELY!
Thank you to everyone for all your support in this new educational project. I had 1000 views of my main case summary video in one week and I know many doctor contacts saw and shared it. If any doctors do want to know more they should feel free to get in contact with me and I can share more about the hospitals, teams, GPs and consultants I am under – IF they want to find out more because this would help their patients to get treated more quickly.
I now have two written radiologically confirmed diagnosis of arachnoiditis from two senior NHS neurologists at two Midlands NHS hospitals. I continue my medical journey under both their care.
Email me at: email@example.com
If my journey changes the outcome for just ONE patient then it is worth it all. So if you are that patient today – I do this for you and pray that the information I share may make your journey a little easier than mine.
“Let me be filled with kindness, and compassion for the one– ‘For the One’ Bethel Music
For humanity. Increase my love”
For more posts of my arachnoiditis diagnosis please see the arachnoiditis menu above.
ARACHNOIDITIS INFO: ‘Arachnoiditis – Taming the Most Painful Pain’ Dr Forest Tennant video and Suspecting & Diagnosing Arachnoiditis (J. Antonio Aldrete) and The Arachnoiditis Syndrome (Dr Sarah Smith)
A medical paper supporting the use of steroids in treating early stage arachnoiditis and in the prevention of further adhesive arachnoiditis: Immunotherapies in chronic adhesive arachnoiditis – A case series and literature review . And another case where IV methlyprednisolone was successfully used: Idiopathic Arachnoiditis of the Cauda Equina: A Case Report from Tanzania
For more previous posts about my story of living with a spinal CSF Leak (from before we understood the arachnoiditis element) please look at the subject heading on the menu bar above.
SPINAL CSF LEAK INFO: Here is a brilliant 2 min animation about Spinal CSF leaks. For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.
8 thoughts on “NEW VIDEO DIARIES: ARACHNOIDITIS & SPINAL CSF LEAK RELAPSE/ FLARE”
Hi. I saw this as I was reading on something that has changed my life. My accident was August 13th 2020 and left me with multiple injuries and lost most job and my ability of life. My doctor is still trying to figure it out but I have gotten worse. Help
I am so sorry to hear about your suffering Tammy. I hope that you find more answers soon & a way forward. It really is so very hard to be so very ill and they cannot work out what is wrong with you. I really hope you find more answers and that things do get better for you. Becky x
Good to hear you have recovered fast with the Steroid treatment.
Just curious, if you have ever given a thought about Spinal cord stimulator for pain.
I have been suffering from chronic back pain for a long time. The burning pain you mention in your videos is what it feels like to me on one side apart from the backache kind of pain. It is always there for me. while sitting or standing ( and a little while walking). just whether it is on a scale of 2-5 out of 10 is what differs for me.
Good to find your site and hoping to keep in touch.
—- Sreedhara Dodla
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Thank you for your message. Sorry you are suffering too.
For my case – no I wouldn’t consider a spinal cord simulator because I already have a spinal leak and mild AA (Adhesive arachnoiditis) so it’s too much risk in my book and I wouldn’t want ANY more procedures on my spine unless absolutely necessary.
My pain is generally controlled through meds/ walking/ stretching and resting lying down later in the day. I don’t think I would gain much from any other procedures and the risk of making things worse is very high.
I hope you get more answers soon.
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I guess you have read Dr Forrest Tennant’s articles/videos on AA.
Anyway you might be on top of AA protocols etc.
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Yes I follow Dr Tennants protocol. It’s helped me a lot!
One more question. Does arachnoiditis show up on MRI( without contrast) or it need MRI with contrast? Just curious if my pain doctors have not somehow overlooked this.
Arachnoiditis can be very hard to see on MRI – especially in early or mild cases. Mine wasn’t seen for years but when it finally was it was subtle. But had been there since my earliest MRIs.
I think generally they say a contrast MRI is better – with gadolinium into the veins.
But arachnoiditis is seen as so rare it will rarely be considered or the radiologist have any experience in seeing it.
So so called ‘clear scans’ cannot completely rule it out. They might rule our more serious AA cases – but even then I know people who have full blown AA (adhesive arachnoiditis) where scans were read as clear for years. Until they found someone more experienced.