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Arachnoiditis

I was just diagnosed with arachnoiditis on Thurs. I'm feeling overwhelmed.
I would like to hear about other's experiences.
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Comments

  • LizLiz Posts: 7,893

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • I was diagnosed formally a few months ago .I am sorry to say its not good news and can be very debilitating .its not curable but can be controlled with painkillers .my consultant told me that its one of the worst pain generating diseases of the spine ,mine came about following a anterior fusion .I find living with the problems it causes is a challenge to say the least .I have just returned from a vacation and my legs and back are feeling very old and worn out and I feel unwell due to doing a little more than normal I need to rest and this is what my consultant has told me to do ,you carnt fight it .do what you can as and when you can but listen to your body .when its time to stop then STOP .sorry its not good news ,there are many posts on here and they have a similar tone to them ,
    KB
  • Thank you for your response. It has verified what I've been thinking. What is puzzling me is that I have not had back surgery.
    I have only had one failed epidural & a blood patch wasn't needed. I have had nerve ablations 3x but my consultant said they were nowhere near the area. I do have fibromyalgia & SI joint problems. This definitely is a different pain.
  • LizLiz Posts: 7,893
    edited 09/22/2014 - 7:20 AM
    I was due to have an esi but cancelled when I found out that although rare it could cause Arachnoiditis, I have put a link to esi, I don't think there is one definite answer to the cause.

    http://www.spine-health.com/treatment/injections/epidural-steroid-injections-risks-and-side-effects

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • I don't tolerate steroids. From what I have been reading about arach. has suggested that injections should be avoided. I am so new to this. I really don't know how to get on the forum to chat. I was an RN for 30yrs. I've had fibro for 13yrs & have SI problems. Now this. Like I said I have never heard of it before. So I'd like to hear about other's experiences and I'll share my experiences on the other two conditions. I am on disability.

  • LizLiz Posts: 7,893
    Unfortunately there isn't a chat facility on the site, but you should get some responses from other members and plenty of posts in the subject.

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
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