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Increased weakness, pain and tingling due to epidural fibrosis.

Shell74Shell74 Posts: 300
Just wondering from others experiences when is the point that you get the epidural fibrosis "taken care of" and stop just medicating for comfort. See my sig for details of surgery/issues.

PM wants to do either the Rhyzotomy, then move on to the SCS trial. However, over the last few weeks things have seemed to get worse. I needed a wheelchair today at work since my leg just completely stopped going, after about 10 minutes of leaning over the nurses desk I was just in moderate pain but could finally walk again with minimal foot drop. Then while driving home, I couldnt lift up my leg to apply the breaks with my right foot. Dont yell, I know that is very serious. I pulled over and called my husband to pick me up. After about 30 minutes it went back to just pain and tingling.

I have tried Lyrica, Neurontin and Topomax all with horrid side effects. But these things wont help prevent continued deterioration or furthur nerve damage anyway. Maybe if I was at home I could work through a couple weeks of side effects to see if I could adjust, but working full time I just couldnt do it. People thought I was nuts, or drunk, I am not sure.

I am just very confused since the extreme weakness/pain/immobility and tingling comes and goes. Dont get me wrong, I ALWAYS have absent ankle reflexes, pain and tingling that effects my functioning throughout the entire day, but is it OK to have the extreme symptoms as long as they are temporary? Fentynal, Fentora and deep breathing are no longer getting me through these episodes.

Is this typical of how epidural fibrosis works? On MRI one year ago mine said extensive epidural fibrosis encasing S1, surgery site and pressing on the central canal. Who knows now, new insurance limits MRI's unless I do 12 visist of PT at $100 per visit.

Any suggestions or comments would be appreciated.


  • I am sorry you are having all these problems. I can tell you that your problems are complicated, but not really how to proceed.

    Epidural fibrosis is a problem as is the arachnoiditis. The problem with epidural fibrosis is that there is no good way to try to rid yourself of it. Some surgeons attempt to cut it out, but it usually grows back, sometimes more virulently than the first time. But it is my understanding that the epidural fibrosis is stable and after it forms initially, it does not continue to grow, unless cut into again.

    So I can see how it could be causing you S1 nerve pain...but I don't quite understand why it would come and go to such extreme lengths...causing the problems like you had today where you really lost control of movement in your leg.

    There is a process that is sometimes done by interventional pain medicine doctors called "lysis of adhesions." It is kind of similar to an epidural injection. Some sort of saline solution is injected in around the scar tissue, and sometimes needles are twisted, like they do in acupuncture to gather up the tissue. Sometimes it works, but I have been led to believe there is something like a 50% success rate.

    Is your arachnoiditis at the same level? If so, I think this could be a risky procedure for you, and might set of the arachnoiditis, which can continue to "grow" and worsen.

    Are you still working with a spinal surgeon? If you are having such severe leg problems, it sounds like something more than the EF might be causing your problems. The S1 nerve is probably compressed. Perhaps L4-5 has herniated...or, who knows, but I think you might want to consider seeing a spinal specialist again rather than a PM doctor.

    I have had similar problems since my PLIF at L4-5 two years ago, and have talked with my surgeon and physiatrist extensively about how to "treat" the EF. The loss of neural signal such as you experienced today is not commonly a part of the symptoms caused by EF. It sounds like the problems are stemming from the compression at S1 and maybe L5, too.

    Please let us know how you decide to proceed.

    Good luck.
  • I'm sorry you are having a lot of trouble with this. There is an extensive discussion of epidural fibrosis here if you type "SCAR TISSUE" on top and I remember you had posted on that thread a long time ago.

    I also have symptomatic scar tissue and it causes weakness, severe muscle spasms, nerve pains (burning, stabbing, crushing, pins & needles sensations, etc) and of course more pain. My surgeon determined that it was best left alone so not to make matters worse. I had a pain pump implanted to deal with chronic back pain and nerve damage, and the symptoms from the epidural fibrosis. My right leg has buckled and given out at unexpected times and that is why I always use a cane.

    I guess it's very complicated to free a nerve root that is encased in scar tissue, huh? They had me try a transforaminal ESI first to see if it would help before going on to lysis of adhesions. It was such a horrible experience since all it did was aggravate my pain. It was a 2 week long h$ll and it couldn't subside quick enough. I told my doctor I'd pass on the lysis and he agreed with me.

    Anyway, if you do get the insurance straightened out, will you go on to have an SCS trial? Please let us know how you do and I hope you get relief from this. Take care
  • I just have no clue which way to go,lol.

    My ortho spine surgeon will not work with me since I went back to the PM, I had posted about that before, in a nut shell he said its PM or Him (not so nicely). I was not receiving meds from him, once I went back to PM (and his collegue suggested PM as well). He wanted to do a cervicle fusion and wait for a while to do hardware removal to see if that helped the lumbar/legs.

    Who knows maybe I could have sent the next level worse than it was before, maybe the arachnoiditis has progressed (it is present from top of the thoracic to the end, but is mild). They are all valid questions.

    As for the lysis, I am very unsure about this, as I am the SCS due to the arachnoiditis. The only reason I consider the lysis is the fact that the scar tissue formed at a time when I was immobilized in a brace while healing from the fusion. After the lysis I would not be immobilized and could prevent the formation much more effectively. In Theorey,lol.

    I thought about dropping my current insurance and picking up the state run program (which I would need to pay for) but the coverage would be much much better). It would be risky since there is a waiting list, but you cant apply unless you have no coverage.

    Sorry I am a bit scattered, I need to head to work. Thanks for the encouragement, not that I am happy anyone else has to deal with this @@@@, but its nice to hear from others.

  • If you live in a large enough city you might want to look for a spinal clinic where the various specialties work TOGETHER on the patient's issues. In any case, it might be worthwhile pursuing another opinion from a new spinal specialist.

    I suppose your ortho has his reasons for feeling the way he does, but on the surface, it seems to be a childish attitude.

    I would suggest you do extensive research on arachnoiditis before proceeding with anything. You might even consider going to one of the big clinics that has doctors that specialize in the treatment of arachnoiditis. One that I am aware of is located in the midwest. You don't want to do anything that will make it worse.

    In my case, the problem that I thought was being caused by epidural fibrosis turned out to be caused by instability in my lumbar area. It took a year and a variety of different tests and different specialists to determine this.

    Sometimes with back problems that are hard to figure out, you just have to keep digging, keep looking for answers, and question the first thing you are told. I was told the only option for me was the spinal cord stimulator. To me that did not make sense, so I told them "no thank you," and kept looking. Even very good specialists have a tendency to go with the option that is the most common.

    So, frustrating though it is, don't give up. Keep positive that you will find a solution.

  • gwennie17 said:

    So, frustrating though it is, don't give up. Keep positive that you will find a solution.

    Its so hard to be positive when all you get is the run around and dead ends everywhere you go. You would think that a major course in medical school would be how to be more compasionate, understanding and how to relate to their patients better. I really think they have no clue sometimes what is like to try and live like this.


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