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Arachnoiditis Diagnosis after over 5 years of 24/7 pain

Am in shock!  A month ago was diagnosed with Arachnoidits after over 5 years of suffering.  The consultant (Head of Spine Surgery at a leading hospital) showed me the "clumped nerves" - inflammation - on the MRI.  Almost fainted because had decided to undergo a microdisectomy next month (out of despair). Cancelled the surgery and have an appointment at a new Pain Clinic next month.  Have tried everything (medication, 3 steroid injections (cause of disease according to consultant), physiotheraphy, acupuncture, reflexology, etc.  Nothing helped except for Percocet  (am taking about 20 mg daily Percocet 10) which gives partial relief for a short period.  The consultant mentiond Cannabis (others also did) but who will give it to me?  A leading neurosurgeon said the doctor who prescribed Percocet was "deranged"(!!!).  
What's going on with professionals?
Grateful for any ideas, comments, suggestions.


  • itsautonomicitsautonomic LouisianaPosts: 2,561
    Arcahnoditis is considered a extremely painful condition for which there isn't a cure.  I am sorry it took 5 years of pain like that to find the issue and very sorry to hear what it is.  I would hope having this diagnosis would offer more in way of pain management.  Another member on here has it and they were looking to do ketamine treatments.  There are PM who have dedicated their entire practice to treating this condition because of how difficult it is.  
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • LizLiz Posts: 9,745
    welcome lilas

    please click on the link for useful information
    welcome to spine-health


    Veritas-Health Forum Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
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  •  Hi Mia, so sorry to hear of your diagnosis and that it took so long. I know you'll be in good hands at pain management. From what I've read, it's crucial to avoid any invasive spinal procedures. When the pain flair comes on, it's important to lay down as soon as possible to take pressure off your back. I've been reading about it because I worry if I may have it too. I'm having electric shock and burning pain in my back, severe nerve pain in both legs, bladder incontinence, and balance issues. Sometimes I get shooting pain in both arms. After years of chronic pain and surgeries/procedures (ESI's, RFA's, ct myelograms, blood patches, TLIF), I'm concerned because this is the worst I've ever been. Now I have neurological deficits and have to go for a surgical consult. Anyway, take care of yourself and hope for the best. Please keep us posted
    Ol' Spiney..Micro-D L4-L5, TLIF L4-S1 -post op central HNP L4-S1,stenosis, retrolisthesis, EF, facet arthropathy, lumbar& cervical DDD. FBSS- Medtronic pain pump & SCS
  • LilasLLilas EuropePosts: 6
    Hi everyone!
    Thank you so much for your reactions and comments.  Don't feel so alone anymore...Some of the things you have mentioned I can perfectly relate to (disk bulges that press nerve roots - L4-5, L5-S1- cyst: pressing on nerve root L5-S1 on the right side) because these were the initial diagnoses 5 years ago.  Was offered nucleoplasty but chose injections first (BAD  CHOICE?!).  Now it's too late.  Try very hard not to become depressed and lose hope but feel intense anger at the way I have been treated all these years.  Anger is a negative feeling but I actuallly feel better when talk about it.  Was also offered a spine fusion  by the same microdiscectomy surgeon (full Professor!).  Why?
    The problem is I feel I have to be my own physician instead of relying on the professionalism of others.
    All the best to those who have written.

  • LilasLLilas EuropePosts: 6
    Forgot something:  have tried (out of despair and not faith) homeopathic Valerian 30C before sleep at night.  Surprised to find that sleep was deeper than before (though did wake up every 3-4 hours due to the burning pain in my lower back, between my legs and along inner thighs).  
    Today plan to start an experiment with an homeopathic medicine for inflammation (won't write down name before I see what happens after a few days).
    Very curious about what will happen (also slightly worried but all doctors have referred to Homeopathy as "placebo", "air", "in your head" (I disagree because had excellent experience with homeopathic medicine  for serious gum infection 15 years ago).

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