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Adhesive arachnoiditis and spinal stimulator

AnonymousUserAAnonymousUser Posts: 49,731
edited 06/11/2012 - 8:23 AM in Spinal Cord Stimulation
Hi Again
I wanted to see if anyone had good or bad experiences with a spinal cord stimulator for Adhesive Arachnoiditis long term - I'm young enough that I am looking many, many years of needing pain management and don't want to remain on pain medications.

Thanks again!


  • ML,

    I'd be happy to answer any questions you might have on either topic as I am experienced in both.... the Arachnoiditis is a non-curable condition that only gradually worsens over time. Right now, for today, the SCS has been my miracle and that is no exaggeration my friend.

    Please feel free to PM me anytime.

    Glad to have you here,

  • I also have been diagnosed recently with Arachnoiditis and should be getting my SCS soon. Waiting for pre-cert with Insurance. I hope it is my miracle. This pain is so bad in both legs/feet/lower back it is hard to function at all. I am disabled and only 33. I had a great career, loved bodybuilding and weight training, and now I lay down 99% of my days to put the pain at an absolute minimum. It is consuming me, and it is running my life. I pray the SCS helps!!!!
    God Bless.
  • Got them both, good results with Boston Scientific SCS for the legs/feet but I was told no SCS would help the pain in my back from that mess. I was told would always be on some form of narcs for the back pain. That's OK with me because I get about 75% pain relief in my legs/feet.

    I first made sure I had all possible salvage operations that could be done(removing loose, too large, infected, hardware, bone from nerve roots, etc.) before I accepted a trial. I had to b e sure in my mind all mechanical problems were addressed even though I understand surgeries can make the condition worse. Really don't think my legs could have hurt worse than they did anyway.

    But, I love my SCS and don't even turn it off to charge.
  • I have arachnoiditis and recently completed my trial. It was definitely helpful for some of the pain but there were areas it just wasn't able to reach. The Doctor who is doing my perm implant is not optimistic that I'll ever reach the unreachable pain and my regular PM Doc is optimistic. I'll take whatever relief I can get.

  • I don't mean to change the thread but I can't help but wonder how they tell that one has arachnoiditis or even epidural fibrosis? I'm in week 3 after a neurotomy and I don't know what's left if that fails. That's why I am reading the SCS thread.
  • Arachnoiditis is diagnosed from either an MRI OR CT Scan in conjunction with a physical exam. Everyone has scar tissue (epidural fibrosis) after surgery. The presence of it means nothing unless you have pain.

  • How did you get arachnoiditis Dave? I may have it as well.
    Hannah Mueller
  • I have had AA for 30 years 1988 I had a dorsal column spinal implant which was inserted at T7, my problems were low back and both legs, yet it worked. I had mine done in Melbourne Australia. The surgeon a specialist in spinal stimulators. It was common years ago that infection caused a lot of trouble and more people had theirs removed, also they were inserting them in lumbar spine which is too low for a lumbar pain problem. Its just like a tens machine sensation filling the low back,groins and both legs. It was wonderful and did help get me out of the bed that jailed me due to pain. A problem was that it often hurt my legs which I found out was the arachnoiditis reaction. It is best for leg pains. Look more into it. It gave me some confidence that when it was on it helped. You cant use it round the clock as the body adjusts and it wont work as well. So you use it when you're not coping for a few hours then turn it off. Things may have improved since mine. I do know that you need to look into your chosen surgeon and ask for referrals and check infection rates. Don't rush into this. Hope that helps a little
  • You'll be happy to know that technology has come a long way. I've had my stimulator nearly 4 years now. I run it 24/7. You should consider getting an upgrade so you can receive more benefit from it.

  • lynn.b998llynn.b998 Posts: 2
    edited 07/05/2013 - 5:21 AM
    hi i am reading all the messages about spinal cord simulators does anyone in the uk have one i am in constant pain taking massive amounts medication mine is situated at L2/3/4 level nuro surgeon has told me he can do no more desperate for some good news thanks guys lynn
  • One doctor never mentioned the spinal cord stimulator as an option but guess what, after a second opinion I am now four month out and loving it! I never turn mine off!
  • I got my scs about 1 week after I got diagnosed with Adhesive Arachnoiditis. I was told that it was pretty much my last option (other than pain med) for about 6 months I really thought the scs was a miracle. Then it just stopped giving me any relief, now I have an appointment to discuss getting it taken out because it is actually hurting. They think it stopped working because of a new impingement of the nerve. Sorry if this is a lot of going on and on but I'm so frustrated. I would talk to A Lot of people before getting the scs.
    12 spinal surgeries starting in 1999
    Diagnosed with Adhesive Arachnoiditis September 2013
    Spinal Cord stimulator 2013
  • Anonymous said:
    Hi Again
    I wanted to see if anyone had good or bad experiences with a spinal cord stimulator for Adhesive Arachnoiditis long term - I'm young enough that I am looking many, many years of needing pain management and don't want to remain on pain medications.

    Thanks again!
    The stimulator should be looked at like another tool in the chest to help you manage your pain. It's highly unlikely you'll be able to quit taking meds to get relief. Most people use the stimulators for a limited time each day rather than 24/7. Hope this helps
  • Might I ask all of you anyone to please comment....i am desperate bascially paralyzed by pain that all my drs keep telling me its RA? I had surgery and 2 epidurals over the past 8 months went from healthy individual to barely getting thru the day drs have me doing all kinds of tests...I have NEVER had a nerve test...can anyone tell me how you get the AA and how did you find out you had it??? Maybe I am just seeking help from the wrong DR...please I really need answers and my life back...or at least a clear diagnosis. Thank you to all.
    This can't be happening
  • AnnieZAAnnieZ Posts: 1
    edited 02/23/2015 - 5:10 PM
    Greetings~ Came here to learn about spinal stims... the Arachnoiditis, which I learned
    I had years ago, is believed to be from the dye that is used during MRI's and any
    procedure that uses dyes can cause this condition. Ironically you have to have it
    diagnosed with an MRI... A wonderful surgeon told me that he takes out the Spinal
    Stims. all the time so I was wondering if there was anything new. I did once have
    Ablation which DID help for well over a year. Yet, like most of us, I'm really really
    really tired of this pain!!! To #15 above me, you said nerve test. Did you mean EMG?
    That's where they stick like 300 needles in your legs to check the nerves...
    Look into Ablation, perhaps that can help you. Best wishes to all! AnnieZ.
  • I've had adhesive arachnoiditis since 1997 due to the dye used with myleograms. Over the years my pain has increased to the point that I can't stand for more than 10 minutes. I'm on 150 fentanyl patches, oxycodone, Tizanidine & neurontin (Gabapentin), to name a few. The only position that makes my pain better, is laying down. Needless to say, I don't have a life.

    My Dr has brought up getting a spinal cord stimulator. To be honest, this scares me cause it means getting another surgical procedure which means more scar tissue. I've had 3 back surgeries, one of which was a fusion with 8 titanium rods; I had the rods taken out as my nerves were wrapping around the rods & it caused severe pain. I've had 15 epidurals & the last made no difference to me. I found that the epidurals added to scar tissue so I stopped those!

    Can someone with AA pls let me know what the results were of your scs so I can make a decision!! Thankyou, M
  • cak59ccak59 CincinnatiPosts: 1
    I just joined this website and saw your question. I see it was some time ago that you asked this question, but I have an answer for you. I had an SCS put in for Adhesive Arachnoiditis. It did not help, and on top of that, you can never get an MRI done again. You have to have a CT scan with dye to see anything in the spine, which is hell. The doc who injected the dye hit my Arachnoiditis. You can imagine that hell, can't you? My gut told me not to do it, and I didn't listen.
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