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Adhesive arachonoiditis and lysis of adhesions

AnonymousUserAAnonymousUser Posts: 49,900
edited 06/11/2012 - 8:23 AM in Pain Management
Hi All
I was wondering if anyone has had any feedback/input on lysis of adhesions for lumbar adhesive arachnoiditis? Good or back - also any input on spinal neuro-stimulators for this diagnosis???

Thanks!
ML


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Comments

  • ML,

    I have to say this about having the adhesions microscopically scraped from the nerveroots or to whatever else they are stuck to.... not a surgery I would do again. No one told me that even if they cleared them out that they would come back again, and in my case worse as it was from yet another surgery. I think it is necessary once the Adhesions have gotten so out of control that they are making a friggin mess of your spine... then I think it is justifiable to do and buys you some much needed time before it starts up again due to new adhesions.

    On a personal note, after I had this surgery done, to clear the adhesions, they left me with permanent nerve damage as they "scraped" the adhesions away from affected nerveroots. I have foot drop, but it has gotten some better over the years, constant leg pain (controlled by the SCS), and severe weakness on the right side of me.... my right leg.

    I'm not saying this to be frightening but I wish someone would have given ME the unfiltered no BS version, you know? And also keep in mind that this is just my own personal experience here that I am speaking of so I only have that perspective.... but it's the one thing I am an expert on... what I have been thru personally.

    I hope this helps. And as I said in your other thread please PM me anytime or I can give you my email addy if you want to talk more about this subject. I hurt my back at the age of 21 and have been dealing with it ever since. I know what it's like to look down the long road of life ahead of us and say "WTF and I gonna do now"???

    Peace and hugs,

    Amy
  • I also had lysis of the adhesions done with my second surgery a year ago now. At least it was done to the nerve roots that he could get to and weren't already destroyed. :S :(
    I am not sure if I would do it again. :| I hoped that it would help but as Bongo said, they do come back again, and they seem to be more dense each time. :S and it also creates even more scar tissue because of having to go back into the area.
    The outcomes aren't great for this procedure from what I have been able to discern, and I sure haven't had any relief from it either.
    Having arachnoiditis means that we are going to be dealing with it in and out of the spinal canal, and truthfully, I am beginning to wonder if it isn't smarter long term to leave well enough alone.....
    Just my two cents on it....
    Sandi
    also a fellow arach suffer
  • The thought of removing something that is causing one so much pain sounds wonderful. But in this case it's best to leave well enough alone.

    Removing scar tissue causes more to form and you will be worse off than you were.

    Best of luck to you.

    Cheers :H
    Patsy W
  • AMY!! your words so inform me just now, about how Lysis would effect my out of control, runaway adhesive arachnoiditis. i am grasping for straws. thinking the only option i would have would be to find a surgeon willing to do this. i was thinking, how could this be worse, and i know it could and will. my pelvic pain, starting with clitoral priapism- reason enough alone to kill myself, urethral spasms, burning urgency to pee, bladder spasms, vaginal spasms, deep pain and spasms in my cervix, burning to urinate and defecate, i am now realizing i also have symptoms of IBS. after years of chasing red herrings, thinking i had bladder cancer, cervical or vaginal cancer, a never ending urinary tract infection and a vaginal infection combined since january 2011, i must get more help, or i am going to have to commit suicide. all of this is from adhesive arachnoiditis, interstitial cystitis, and all other symptoms due to the surgical intervention of my broken back which left me unable to walk. after 3 MVA's over 20 years, i feel quite hopeless.
    won't getting a SCS also trigger AA to go into further overdrive? which kind should i get? it is june of 2015, and what is new? are pain pumps effective? i've been on morphine and more since march of 2008. help? thank you for enduring my Organ Recital, as my creative gay friend calls it...
  • pamalumappamaluma Posts: 4
    edited 06/23/2015 - 1:00 PM
    I see your post was placed in 2008. how are you today, in 2015? has anyone here had a good experience with the scraping/lysis? why would they offer it, even, if it didn't work? has anyone had a cord cut, or nerves removed, other drastic things? what about paralysis, does it mean pain lifts off?
  • is the recommended treatment for arachnoiditis. The leads are placed outside/along side the covering of the spinal cord (dura) and electric impulses are sent along the spinal cord, which interrupts/changes the pain signals being sent. A pain pump is not recommended because it involves inserting a catheter into the spinal cord to deliver the medications into the spinal fluid. It can cause arachnoiditis to worsen and spread.
    There are nerve pain medications that can help to ease some of the pain of arachnoiditis, gabapentin,lyrica, cymbalta are a few.


  • i am at my wit's end, and suicide seems like a more viable option than many others. thank you sandi for warning me about the pain pump. your words are SO VERY, VERY HELPFUL. same with amy. reading about the spinal cord stimulator, i've just got to try it. here's the rub- my concentrated neurogenic pain is focused right in my pelvic floor. that sounds so polite, for such raging, wrong, sensations coursing through my clitoris, urethra, vagina, cervix, rectum. those are what make up my "pelvic floor", which is misery. it all has pain, burning and sharp stabbing, with this ungodly runaway ITCHING. all genitals outside are itching insanely: so bad is the clitoral priapism, hard spasms endlessly, urethra is burning, and in spasm with bladder. also cervix spasms like i am giving birth, and weakness in my legs, all come from my lumbar/sacral spine, from a failed 3 level surgery, where he gave me adhesive arachnoiditis. it makes me recoil back into bed. i cannot handle too much joyful interaction with others, and it is very difficult to stay bouyant!
    in my personal life, i am an artist who has not painted in 6 years. a profound loss.
  • Great outcomes in treating nerve pain, so it worth investigating, and going through the trial.
    Best wishes for a great outcome.


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