In July 2022 I had another acute relapse/ flare of my Arachnoiditis/ Adhesive Arachnoiditis symptoms. This ironically coincided with ‘Arachnoiditis Awareness Month 2022’ so it seemed like a good opportunity to do another video to raise more awareness of the seriousness of the condition and how it can be treated.
These are a combination of short video diaries documenting the flare progression, symptoms and response to a 3 day treatment of IV 1 gram bags of methylprednisolone. Thankfully I continue to have a radical response to this treatment which produces an almost immediate reversal of the horrendous acute relapse symptoms. Before diagnosis and treatment these flares would continue for weeks to months and sometimes I never returned to previous baselines. So this treatment is rather miraculous for me. Although it doesn’t work for everyone and mainly is only effective in more mild to moderate Arachnoiditis/ AA cases.
These are my video/ photo diaries recording the journey of my relapse and treatment over a one week period which is the quickest I have had treatment after a flare explodes. I am very grateful to my two consultant neurologists at two NHS midland hospitals and the A&E and GPAU teams at my local hospital who cared for me so well and enabled me to receive the IV steroids as a day patient at my local hospital. After this treatment I will do a two week taper from 20mg oral prednisolone down to 5mg alternate days as soon as possible.
Content Summary/ Chapters
0:00 Intro
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.
7:09 20mg prednisolone, 50mg diclofenac, 50mg pregabalin & 4.5ml LDN
7:25 Video of me struggling to walk
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
For the full summary of my medical history including ladder fall in January 2015, spinal CSF leak diagnosis and footage of my January 2021 arachnoiditis flare see this 5 min video: • MY SPINAL CSF LEAK & A...
To read more about my arachnoiditis diagnosis in July 2020 and journey since then see: beckyhillblog.com/category/ar...
To view my Jan/ Feb 2021 arachnoiditis flare playlist including symptoms see: • Arachnoiditis Flare Ja...
Twitter: Beckyhill3
#Arachnoiditis #Adhesivearachnoiditis #SpinalCsfLeak #CSFleak #TarlovCysts #SIH
UK CSF LEAK CHARITY: www.csfleak.info/
US CSF LEAK CHARITY: spinalcsfleak.org/
SPINAL CSF LEAKS: Clinical Presentation, Investigation Findings, and Treatment Outcomes of Spontaneous Intracranial Hypotension Syndrome (NHNN authors): jamanetwork.com/journals/jama...
ARACHNOIDITIS: ‘Arachnoiditis - Taming the Most Painful Pain’ Dr Forest Tennant video • Arachnoiditis-Taming t... and ‘Arachnoiditis No Longer A Rare Disease’ www.practicalpainmanagement.c...
ARACHNOIDITIS: Suspecting & Diagnosing Arachnoiditis (J. Antonio Aldrete) www.practicalpainmanagement.c...
IV STEROID TREATMENT PAPERS: Dr J. Antonio Aldrete also co-authored a comprehensive medical book called ‘ARACHNOIDITIS THE EVIDENCE REVEALED’ with a whole chapter (51) dedicated to the study of using IV Methylprednisolone in the acute stages of Arachnoiditis/ Adhesive Arachnoiditis to prevent further progression and damage.
Another medical paper supporting the use of steroids in treating early stage arachnoiditis: Immunotherapies in chronic adhesive arachnoiditis - A case series and literature review www.sciencedirect.com/science...
And another case where IV methlyprednisolone was successfully used: Idiopathic Arachnoiditis of the Cauda Equina: A Case Report from Tanzania www.karger.com/Article/FullTe...
27 июл 2024