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does anyone know about arachnoiditis?

AnonymousUserAAnonymousUser Posts: 49,002
I had a ct/myelogram done recently and the person who read the report said there's a possibility of arachnoiditis. I had clumped nerves at L2, L3 & L4. I thought this odd since my surgery was done on L5-S1 and I've learned that arachnoiditis can be caused by surgery. Does anyone know more about this condition? Can this begin above the surgery site? Or does it begin right at the surgery site? Can it show up years after the spinal cord or roots are damaged? Like 10 - 20 years later? Just searching for answers.





    some explanation of arachnoiditis. i think zach and i spoke a little about this before. this is not a diagnosis you really want. you want to try and get everything done you can and then sort it out and see what's left. maybe it won't be arachnoiditis. at this point, i refuse to accept this diagnosis for myself, i think it's still too early to give me that curse.

    if someone gives you this diagnosis without a good workup and treatment for what is posssible, find another doctor.
  • I had the ct/myelogram done, which said "suggestive of Arachnoidosis." It said I had nerve clumping. Of course I do not want this diagnosis. But if the ct/myelo shows clumped nerves and I have right thigh pain (pokey, tingling, itching), isn't that enough to prove it? Or does more need to be done? I guess I'm confused. I thought this test was pretty much reliable to diagnose this.

    I've read up on Arachnoiditis a lot. I dread the thought of having it. I'm scared to death after reading about it and knowing that something could have showed up on my test that suggests it. How will I know for sure? What else do I need to do? I have another doctor's appointment coming up, and I plan on showing him the ct/myelo also. I definitely want another opinion. My neurosurgeon that did my back surgery just shrugged it off as nothing. But, because I've been reading about this disease, I've found that it is underdiagnosed because it can be do to surgical procedures, etc. Of course, if the doctor thinks he may be at fault (even if it's not really his fault), he may just want me to go away.

    Please tell me your thoughts. Do you have this condition? What are your symptoms?

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  • Have you heard of the 5 stages of acceptance of death(or disease I guess?) Well, I'm still in denial. I do not want thhis to be "officially" diagnosed yet, I believe I still have someting salvageable. This dx has been mentioned but I told the doc we weren't talking about it becuz I refuse to have it. OK, that sounds like a 2 year old, but I need to make sure everything else that can be done gets done before they write me off.

    I am work comp. Personnel is already trying to make me take ssd. I have too much life left for that, so I need to stay in my denial stage for a while.

    Today isn't the best day, I see my doc tomorrow. I will write you a novel in a couple of days that maybe can give you a little more info or at least point you in the directiton for you to find out more.

    :) Angie
  • Thank you for your help. I'm sorry that you're having a bad day. I also see my doc tomorrow (for a second opinion about my myelogram). Maybe we will both get some good news for a change!! :) Again, I really appreciate your help. You seem very knowledgeable. (That website was helpful as well)

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