Adhesive Arachnoiditis

Adhesive Arachnoditis. Dang. I didn't realize when they found this during surgery in January that it was a big deal at all. I've been reading up & it actually kinda tossed me for a minute. For those of you that know me, not much about my health and having to adjust to it puts me seriously offbalance. I have, since that moment, recovered my sense of humor & not-too-flapable-ness for the most part.

So here's the skinny on it. Adhesive Arachnoiditis is the most severe type, it causes adhesions aka scar tissue to form, which in turn compresses nerve roots & impairs their blood supply, as well as impede the normal flow of CSF...that is what they found when they went into my back and cut a lot of the adhesions out between L3-L5. The problem, I'm finding out is that more adhesions can form and continue to destroy areas, and the Arachnoiditis also causes a lot of pain...which could be 1 explanation as to why I am having so much lower back pain & contribute to several other of my lower body symptoms historically. It is also an inflammatory disease...the arachnoid/subarachnoid area has inflammation going on after the several ways that the disease can start...there seems to be a large # of people with it that also have other inflammatory diseases or autoimmune diseases.

It is probably from the epidural that was done when I had the total hysterectomy in 94. It was in there a long time & shoved around a lot & they used it for anesthetic and pain medication. They call it 'chemically induced' when that is the cause. It probably wasn't helped & could have been worsened by the 2 lumbar punctures I had, but I don't think that was the main issue as I only had 2 & they were very recent...2004 & 2005.

Arachnoiditis symptoms can account for the pain in my lower back (tho' it may well be combined with other lower back issues like the LSTV & lumbarized sacral vertebrae), cause numbness/tingling/water & crawly feelings, sleep disturbance, weakness, muscle cramps/twitches/spasms, stiffness, fatigue, joint pain, balance difficulties, loss of mobility...among other things.

The really crappy things are that, since it is incurable & mainly treated with pain medication & physical therapy, I will most likely be on pain medication for the rest of my life and there is no guarantee that I will continue to be able to walk in the long term as the adhesions could regrow around the cauda equina nerve bundles in my lower back to my legs & cut off the communication. They don't really recommend surgery, tho' it probably wasn't a bad thing for them to remove the adhesions there since they had to go into my lower back anyway.

Another interesting thing is that many people with Arachnoiditis are diagnosed with Multiple Sclerosis or investigated for MS.

I'm sure I will pontificate about this more in the future. But there it is. My alien body isn't letting me off the hook.


Louise said...

Hello Kbanshee, Google alert sent me your link. You sound so young yet you have been diagnosed with CAA(chemical adhesive arachnoiditis),at the end it does not matter what it is called, the disease is nasty, overwhelming at times but nevertheless it remains to be struck down. You probably know by now that there are thousand and thousand of people around the world who suffer from this disorder.I am from Canada btw and french to complicate matters lol If you require more info about the disorder please let me know, I belong to few groups on the net that are very good. I also have a website www.arachnoiditiscanada.com.
I hope you recover well as I believe you are young. I have had AA for over thirty years and did manage to work and have a career until I was fifty four, then the rest is history, I am now disabled but doing better than last year.

aj said...

I am curious how you are doing now 7 months (i think) post-op from your detethering. Do you feel it was a worthwhile surgery for you?

I think my problems (syringomyelia, possible occult tethered cord) are caused by arachnoiditis of unknown origin; i've never had surgery, but meningitis and/or trauma could explain it I suppose.