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Epidural Fibrosis (Scar Tissue)

LostYouthLLostYouth Posts: 8
edited 06/11/2012 - 8:26 AM in Chronic Pain
I have been reading this forum for awhile now and it has helped me in making decisions about my own care. I recently had a microdiscectomy L4-L5 in November. I had the same surgery 6 years ago at L4-L5 L5-S1.

On my most recent MRI done in September, it showed a lot of scar tissue and a medium herniation at L4-L5. My surgeon said that he did not know if it was the herniation causing my pain or if it was the scar tissue. He culd not guarantee that if I had the surgery that my pain would go away.

I went ahead with the surgery hoping this would help the pain in my rear end and my left leg. Well after 4+ weeks post surgery I am still having the same pain issues as before. The surgeon told me that there was a lot of scar tissue from my first surgery and he almost could not get to the herniation to remove it because of the scar tissue.

From everything I have read on the internet and on here, it looks like there is nothing that can be done to deal with the scar tissue and that I am headed for chronic pain basically forever.

My question is, where do I go from here? I have not seen my surgeon for a couple of weeks and I have a follow up on January 6th. What should I ask him? Will he just tell me there is nothing he can do and send me on my way? I have not asked the surgeon about the pain pump, but is that a possibility?

I am very confused about what to do and I am very scared as well. It is tough to admit that I am scared, but I have a 4 year old and a new born at home. I have to be a husband and a father and I have been neither for awhile now.

I will stop rambling now and will await any responses.

Thanks for the help!
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Comments

  • I had a perfectly good back but an anomallythought to be malignant was found. After it was removed I lost the use of my right leg and have had all kinds of pain. Reason: epidural fibrosis. No other doctor will see because they do not want to try to correct another doctor's problem.

    Now I have problems with my bowels and bladder. Unfortunately, I will have to live with the problem for the rest of my life. It had been five years. THe faact that your doctor operated a second time, seems to me he has hope. Try to streatch and massage the scar, it make thin it out. Good luck.
  • Jay. Sorry to hear you're having these problems. If the scar tissue is adhering to the nerve root and since your pain is in your legs I'm guessing it is a nerve thing but that's just a guess, there may be a couple of things you can try. First of all, there are drugs specifically for nerve pain OR what my surgeon recommended to me: a spinal cord stimulator. There's a lot of info on this forum about stimulators; maybe you could do a search and see what comes up. I don't blame you for being scared. I'm scared too. This is a place where you can come and admit to being scard because EVERYBODY will understand. Best to you, Susan.
  • For some relief, sometimes steriods(specifically Kenalog) in an epidural or selective nerve root block. There's even some newer methods of doing epidurals when a lot of scar tissue is involved-they can go at a higher or lower level and thread the catheter to the site or use a small camera in the catheter to see exactly where to apply it(that method is called a caudal epidural, think it costs about $10,000.)

    Look for posts by Zachback. He's posted a new treatment method where steroids are used then the patient takes a course of oral inhaled steriods typically used for asthma patients(Advair.)

    I would ask for a referral to a pain management interventionalist to see about these things. Neurontin or Lyrica for nerve pain are meds, too. As I say to everyone facing serious problems, please also get a second opinion just to be sure.
  • I am sorry to hear about your pain. I am 6 mo. Post op from my first L5S1M/D and just found out it re-herniated and that I've developed epidural fibrosis. From what I have read online and from what my NS and pain doctor said, scar tissue formation (epidural fibrosis) is chronic because surgery to remove it will cause it to just re-form. Were you ever given PT after your surgery? My (former) NS never gave my any until I insisted five months post op. My aquatic physical therapist told me that I would have been much less likely to develope the scar tissue if my NS had given me PT, stretches or anything sooner. She also told me that some people are just more prone to scar tissue development than others. The pysical therapy has not helped me but my physical therapist showed me something that is supposed to help smooth out the scar tissue. Even after six months the scar on my back is still to sore to do this but maybe it will help you: message your scar with your thumb ( only it's more like rubbing your thumb back and firth over your scar). Apply gentle but firm pressure. I can only do this sometimes because like I said the area is still tender and in pain. I would also ask you doc if this is approriate for you to do. My boyfriend helps me with this because I can't do
    it by myself. Let us know how you doc appointment goes and best if luck.
    -Mariah
  • Caudal epidural. That's what I had last Monday. See my post under injections. I fell the next day on a bag of potting soil my husband left right in the middle of the walkway and, I swear, for the first time since my fusion, my pain level hit a 10. All I did was feel crappy. I spent Christmas day alone in bed. I'm finally feeling back to normal (which isn't that great) but next time I'm feeling sorry for myself I'll just remember I could be getting a caudal epidural. I absolutely loved hanging out, my big butt fully exposed to humanity waiting for the doc to show up. Geez. Susan
  • hi
    i am in the same boat as you my friend .and i have just been told that the pain team can do no more for me .i wanted another epidural but the pain consultant said that when she did my last one she nearly snapped the needle in my back because of the scar tissue ..i am waiting for another MRI to establish just how much scar tissue there is
    my advice to you is make sure that you are on the right amount of pain killer and try an acticare unit and just do what you can when you can ..DONT beat yourself up because you can't do stuff that you once could {its just not worth it mate!!
    all the best
    STRAKER
  • After the bad effects of falling the day after my injection, I actually had 3 weeks of absolutely NO PAIN. So I'm going to try another one. Actually, I was feeling so good I thought I would try getting some exercise by using the treadmill. I went 20 mins and then my pain returned, Did the treadmill thing quicken the return of the pain? I don't know. Maybe. But, oh, it felt so good. Susan
  • Hi all, I've been reading about this "Epidural Fibrosis" and I've never heard of this before now, I'll certainly have to get some info on it tho.
    I did want to share with you that it sounds alot like the condition that I have been dx'd with which is Arachnoiditis...sounds spidery huh? I guess it sorta is too. It is also scar tissue and especially after a surgery can take off and create quite a mess. I have been to see a neuro surgeron a couple times in the last few years (once was because there is a "tumor" or growth of some sort) and the neuro told me that it is not uncommon for people with spinal surgeries and/or fusions to develop these, and it could very well be a tumor but they are usually benign and we'd just keep and eye on it. Anyway he told me that even if he were to attempt a surgery to find out exactly what it was he really doubted that he could get thru the extensive scar tissue. That made me recollect years prior when I had the instrumentation removed from my back (C3-T11) the dr (then) said that I had extensive scar tissue and that he had a time removing the rods, screws, wires, etc. and that when he was done getting it worked off of those he had even removed alot of extra. The scar on the outside of my back had actually spread apart a couple inches just with in 17 months and he had also done a little "plastic surgery" on that scar too and made it smaller, at "no charge" :))( .Then, years later when I find out that I have arachnoiditis (which is very painful because it encases nerves,muscles, etc.) and that when the dr thought he was doing me a favor by removing what excess scar tissue he could in fact it worsens the condition. Thanks Doc :< . The neuro also confirmed that any more surgery attempted on my back would just worsen the condition. So it's like even if I wanted to have any sort of back surgery (which I don't) I'm really doing myself a disservice and creating this stuff to spread more...No Thanks.
    All in all, I just wanted to let you know about this condition because alot of the symptoms sound the same too and you may want to check with your dr.

    Yuma
  • I sorta lost myself on the last post and I did want to add that in everything that I've read about Arachnoiditis it has stated that even getting injections "can" cause this condition or if a person has it, it "can" worsen it.
    I'll check around in some of my old paperwork and see if I can find the articles that I have, may take me awhile tho.
    But, it would be worth asking your drs about or if you feel up to researching check it out.
    As I stated this was a few years ago and maybe things have changed since then and I just haven't heard about it.
    Good luck to all of you.

    Yuma
  • I would certainly be interested in those articles that claim caudal epidural injections can make the scar tissue situation worse. Susan
  • gets a degree of scar tissue so I am wondering what makes some problematic?

    I have had 3 operations and will have scar tissue. My doc has never mentioned it, ever. One PT did, was very keen to massage and try and reduce but that all fell by the way as time went on.

    Do they blame scar tissue on ongoing pain?

    I have read a little about it.

    Arachnoiditis doesn't sound like a good place to be. I wish you well.
  • I don't know why some people have problems with it and others don't. I have a lot of problems with scar tissue. During my last surgery to remove the hardware at L4-L5 (since my surgeons FINALLY did a CT scan and found that yes, the screws were causing me pain), the surgeon said he would try to clean up scar tissue too since the pain in my leg was still so bad, even after 13 months. Anyway, he found scar tissue on my nerve! No wonder why my leg hurt so bad. Now the leg pain is worse since surgery, but they say it should be expected b/c they messed around with it. Its been 10 weeks. Anyway, I have "scar pain" now, per my PMR, and that is why it hurts like heck to poke at my back. I'm skeptical, even though I really trust him. Oh well. If this doesn't work, I'm going for a spinal cord stimulator. I hate the neorontin. 2700 mg per day, makes me sooo tired and confused all day. I just switched to Lyrica, maybe that will be better?
  • I have had this condition, diagnosed anyway, for about 5 years now. I have to agree with an earlier poster (Yuma I believe) that this "Epidural Fibrosis" and what you are describing sure sounds like AA. I hope not. You might google it and just read a bit about it. I have mine from: multiple lumbar punctures, multiple ESI's, 7 CT Myelograms, and 7 surgeries at the same level. 4 years ago the adhesions were so bad and had adhered to nerveroots and anything else they could stick to, and this was causing ever increasing pain. My Neurosurgeon did surgery then to "microscopically scrape" the adhesions from the nerves. Unfortunately it left me with permanent nerve damage in my right leg. The good thing was that it helped with the pain for quite some time, but alas am now going in to see my NS for new symptoms in my good leg.... I'm scared sh'tless that it is from the progression of my AA and he is going to tell me we need to clean up the scarring again. I see him on Feb 13th so I am trying not to borrow trouble before then but it is a concern of mine.

    Sorry to go on and on, I just wanted to throw out my 2 cents on what Yuma had already mentioned..... I have to agree that it sounds VERY familiar.

    I wish you the very best. Keep your chin up and please don't hesitate to PM me, or any one of us, if you have other questions.

    Hugs to you friend,

    Amy
  • Thank you to all who have contributed to this post. I think epidural fibrosis does sound a lot like arachnoiditis. I'm not sure what the difference is or even if there is a difference. As it turns out, I had another MRI earlier this month and I re-herniated the disc at L-4 L-5, the same level I had surgery on in November. So while my pain may be caused by the scar tissue, it could also be caused by the re-herniation.

    My OS says that he is not sure, but tells me I have two options from here. I can try a fusion or a spinal cord stimulator. I have a lot to think about because neither option sounds great to me at this point.

    Good luck to you all and take care of yourselves.

    Jay
  • Jay,

    Best of luck to YOU as well, in sorting through all of this and making the choice that is the best for you. It's a biggie I know and alot to digest. Obviously the reherniation can't be helping matters, and personally I hope this is the culprit as opposed to the other option.

    Take care of yourself and don't let anyone push you into a decision you aren't comfortable with. (On a personal note, I was made aware of the option for the SCS 3 years before I actually went thru with it. It took me that long to get my head around the notion of having electrodes in my spine and a battery pack implanted in my upper butt cheek... one more lump it didn't need!! LOL! So, take your time!!)

    Peace,

    Amy
  • Ah, don't really understand your OS saying, "try a fusion or you can have a SCS." Spinal cord stims are ONLY for people who are non-surgical candidates. You can look at one company's website www.tamethepain.com and it clearly states that no further surgical interventions are warranted.

    Don't forget a second opinion or third opinion or fourth opinion could be sought! :)

    Angie
  • I just wanted to bring to your attention some options you might have.
    1- Manipulation Under Anesthesia (MUA)has a good success rate for post surgical pain. MUA breaks up scar tissue and adhesions which can be causing pain. This procedure is non invasive and has been around for over 70 years. MUA cannot be done on an area with hardware or fusion, as th eprocedure involves movement and stretching.
    2-epiduralysis is an injection of hyaluronidase into the epidural space that is meant to dissolve scar tissue.
    3-The Racz procedure: Racz catheter is a small caliber, flexible catheter that is introduced into the tail bone under X-Ray guidance. The tail bone has a small opening at the bottom of the vertebral column, known as the sacral hiatus, which allows entrance into the epidural space. The Racz catheter can be placed into the epidural space through the sacral hiatus and can break up adhesions that may have been caused by surgery as well as deliver steroid medication into the epidural space. Patients that are candidates for this procedure have usually had surgery or have severe degenerative processes affecting the lower back.

    if anyone has any questons feel free to PM me.
  • causing me excruciating pain .i am waiting for another MRI scan on the 12 of Jan .i also thing that the S1 disc has reherniated all i know is that for the last month i have had to up all my meds .my pain had gone through the roof from morning to night i am in agony and both my legs feel weak even walking in the house.{going out as to shop get diesel even drive} is out at the moment as thing have got so bad.mornings are HELL it has been a flood of tears every morning due to pain ..and it does not get much better through out the day.i don't know what i am supposed to do??
    STRAKER
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