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Any luck with Arachnoiditis?

Rugger973RRugger973 Posts: 1
edited 06/11/2012 - 8:43 AM in Chronic Pain
Hello everyone, I'm new to this forum, and I'm looking for any advice/input that any of you have. I'm 21 Yrs old and have had back pain for 3 years now. After a year, I finally got an MRI and it showed l4/l5 herniation and an l5/s1 herniation that presses on my S1 nerve root. I started with PT for 6 weeks with no relief, then had my first epidural. I wasn't in any pain for about 2 weeks then it came back worse than ever (found out later that he hit my spinal sac). After that I dealt with it for another year before seeing another PM doctor. I had a series (4 separate times) of Lumbar epidurals, SI joint, and Facet Joint injections. By this point they really did nothing for me pain relief wise.

I got another MRI in the fall and my problems got way worse. I still had the herniations and pinched nerve, and also added on DDD, Spinal Stenosis, arachnoiditis, and a disc losing height in the middle of my back. I was in a lot of pain so I started the hunt for a surgeon. I had a microdiskectomy/laminectomy (he also removed a facet joint). The surgery went really well, and got rid of the shooting pain in my right leg, but still to this day I'm in a good amount of pain. After recovering I thought I would be in a lot less pain, but that's not the case.

I went through PT and stayed at the same pain level. The only thing that changed was the shooting pain. I've been seeing my PM doctor currently and we're trying a few different things. They initially thought all the pain I'm still having in my lower back is my Facet joints because of the exams, so I had a epidural block with absolutely no difference. I had an EMG a few weeks ago, and it shows my S1 nerve is still pinched! They think it's from the arachnoiditis. My nerves start thickening around the l2/l3 level then they clump really bad around my l5/s1 which they believe is pinching my nerve. I'm not positive what they just injected me with last week, but it was to help break away scar tissue.

I'm still in the same amount of pain I was before, and am still going to PT. We talked about the option of a SCS, but I'm not really for it. Just curious how others have dealt with this problem. From what I have read and researched there is no cure for it, and it is a recurring thing. I never was big on the narcotics for relief, currently I only take 2 tramadol in the morning and at night, then a valium at night for sleep. It just really bothers me because I'm only 21, and I know eventually I will need to have more work done on my back.



  • Welcome here. You are so young to be dealing with this!

    I made sure all possible surgeries were done(like hardware removal, bone overgrowth, etc.) before I chose the last end treatment of a spinal cord stimulator.

    I don't think there is a cure, only things to help you live with the symptoms and living a healthy mental and physical lifestyle to slow the progression. You might find water PT easier since there is less weight bearing but yet you can still try to improve your range of motion. The scs makes life bearable for me. While it does not take away all of my bilateral leg pain, it takes enough that I haven't tried to cut off a leg since.

    When my legs cramp, I find it helpful to lay on a heating pad. My leg cramping is from lack of blood supply to the spinal nerves(neuroclaudication or pseudoclaudication) from the adhesive arachnoiditis. I suspect that the heating pad to my back helps increase blood circulation to those nerves and therefore helps the cramps, tho it may be a placebo effect. Don't care, it helps! :)

    I have tried Lyrica, Neurontin, Topamax, etc. for the nerve pain. Like I said before, all surgeries were done first before I agreed to a scs. Narcs do not help my leg pain, but I take them for the back pain as the placement of my scs does not cover my back. I have a Boston Scientific model and think it was the best choice for me.

    If a surgeon attempts to remove or dissolve the scar tissue, it is my understanding from multiple physicians in different practices and states that the scar tissue WILL come back, usually worse. I have the understanding(just what I've been told) that more injections or any invasive treatments can increase the scar tissue.

    Good luck to you, please keep pursuing a plan that works for you. I hope you and your doc have a good relationship, it sounds like he is open to trying many options. Just a word of warning on meds-you take Tramadol, make sure you take no anti-depressants along with it, can cause life-threatening reactions.

    Keep posting so we can know what treatments work/don't work for you!


  • Second everything Angie just said. It's a shame that you have to deal with this at such a young age. I've also tried the suspect drugs, Lyrica, Neurontin, Cymbalta, Topamax, and Savella. Unfortunately, I've reacted poorly to all these drugs and am left with Oxycodone and my Stimulator for the pain, Zanaflex for the muscle cramps which can be unrelenting at times, and Trazadone for sleep. I walk and stretch regularly every day.

    Based on my research, I would be very leery about doing anymore shots cause it could aggravate the condition. There is currently no cure. The best you can hope for is to manage it and hope that you level off at some point in time. Personally, I'm still waiting to level off. My personal belief is to try and stay active as much as possible to slow the progression of the scar tissue and keep the nerves moving as much as possible.

    Feel free to ask any questions through the forum or via PM. This is not a fun condition to have but its also not the end of the world.

  • Hi Rugger,

    First of all welcome to spine health. You'll find a great group of people around here, who are kind and helpful. Next sorry to see why you had to find us. Arachnoiditis is not a fun disorder, and has no cure. I also have a form of Arachnoiditis, which is Adhesive Arachnoiditis. I really don't have much more info for you then what Angie, and Dave posted. I go agree most hardly with epidural shots, and surgeries. They speed up the process of the nerves fusing together.

    The only other thing that has helped me are some support groups on facebook, and yahoo groups. They have helped me greatly with information, an further support. I have had good results with anticonvulsants, pain meds, and tricyclins for pain managment. I'm not willing to try a SCS right now, maybe if thing start to get worse I'd look at one. Right now I'm stabilized, so I don't want to mess with my lumbar.

    I hope you find the info your looking for,
    Bobbi Jo
  • Bobbie Jo made an excellent point about finding online support. You can make a lot of contacts here on SH. It truly helps to know you are not alone.
  • I just wanted to say hello and welcome. I don't really have any info to add, but I did want to say hi because I'm also a young spiney in my early twenties. Facing chronic pain at this age definitely presents some unique challenges. The boards are great, and everyone is so helpful and supportive so hopefully as you continue on this crazy chronic pain journey we'll be able to offer more insight and support.

    Best of luck, and keep us posted on how things are progressing!
  • I don't have arachnoiditis, just epidural fibrosis but I still wanted to welcome you to SH. It's such a shame that this happened to you so young but I know you'll make friends here and on other online support groups who can relate to you. I've tried many medications, spinal injections, PT, surgeries to help my chronic back and nerve and I ended up having a pain pump put in. Anyway, I hope you enjoy this forum and find out everything you want to know. Take care
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