“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.
Email me at: firstname.lastname@example.org
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 on my arachnoiditis diagnosis and ongoing journey please click here.
For more previous posts about my story of living with a spinal CSF Leak (from before we understood the arachnoditis element) please look at the subject heading on the menu bar above.
Here is one of the best informative medical papers on arachnoiditis and adhesive arachnoiditis.
This video is one of my favourite intro’s to the diagnosis and treatment of arachnoiditis.
Here is a brilliant 2 min animation about Spinal CSF leaks.