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Scar Tissue problems post Fusion

Shell74Shell74 Posts: 300
Hello, I am just wondering if I can get some suggestions or experiences so when I show up to my doctor on Wednesday I can keep my thought clear.

I had L5-S1 fusion surgery this past August. The first 3 months I did good, but then things went for the worse. I have had new leg pain and weakness, tingling 24/7 from the butt to my toes that gets worse when I sit. A new MRI says "Rather extensive epidural fibrosis posterior to the thecal sac but also extending anteriorly along the left lateral aspect of the thecal sac to surround left S1 nerve." OK, I know, tons of scar tissue where is doesnt belong,lol

What kinds of questions would be good to ask my doctor? Does this generally get worse or calm down over time? Any suggestions or comments would be appreciated greatly.



  • Zachback, I read over those posts and boy have you been thru alot. I am not looking forward to a long process, I just want to get back to work.

    Did your pain start shortly after the surgery? Was it progressive or did it level out after some time? I know the scar tissue can remodel over about 2 years, all I can do now is stretch and continue with PT, but when does permanant damage occur?

    I am just wondering how long it will take to come up with a plan. I called my old PM doctor and he can get me in tomorrow or 3/12, so I took tomorrow. Then I will see the OS the next day. I wish I could do it the other way around but it just couldnt work.

    Maybe I am jumping the gun, but the PT says I need to be proactive since the symptoms are getting worse weekly. I am just wondering if I should be heading to a NS instead, I just dont know.

    Of course I knew the risks of fusion surgery, but I never expected to come out with worse pain than when I went in. My kids keep asking when I will get better, I feel so bad I cant give them an answer.

    Thanks for listening Zach, your input is appreciated!
  • I don't have any real advice, but I am curious to know what your doctor says about your situation. I am only three months out on Wednesday, but I have some problems that I did not have before. So, lemme know how it goes, ok? :)

    One Love,

  • Thanks Zach and Stephanie.

    I guess you could say when I am sitting I just feel mostly vibration, throbbing pain and tingling. I guess its good, that I feel something,lol. My legs are scratched up and bruised beyond belief, I get what I think is a slight itch and find myself digging my legs up and drawing blood. They also get very cold or very hot and red. Seems I go from hyer to hyposensitive like the flip of a switch.

    I will be sure to update after I see the PM and OS, hopefully they will be able to set up some sort of plan of action.

    Thanks all,
  • Gosh Zach, you have been thru so much crap! Your TIA sounds more like a stroke to me, TIA usually isnt so severe. I had a small TIA in 2003, it happened during a lab at school, by BP went 220/186 and I passed out. Thankfully, all I was left with was a slightly droopy eye on the left side, everything else was fine. Now I am just on lots of BP meds.

    It is so nice to here that you are having good results with your scar tissue removal. My doctor has just been telling me (before the MRI) to give it time and it will go away, doesnt seem like that is the case here. I am not sure how my doctor can dimiss this as the cause of the new progression, it all fits. I will see what he has to say.

  • I think this is fairly common that a surgeon will not acknowledge that scar tissue MIGHT be the cause of continued nerve pain...just like they also really don't like to talk about arachnoiditis.

    I've been going through this with my surgeon and do not yet have a solution.

    It is a difficult topic as scarring is the body's normal response to a surgery where something is cut out or away. The body starts to make new tissue to fill in for what is missing. We all grow scar tissue to some extent. It is a normal part of the healing process. Unfortunately, in some people, it grows to excess and becomes a problem.

    I'll will be interested to hear what your doctor has to say.
  • OK this is what I am being told.

    My PM doctor said that the scar tissue is most definetely the cause of my leg pain weakness and tingling and wants to do a nerve block on the left side and put me on 300 mg of neurontin daily. They said whatever they would inject may break up the scar tissue as well as numb the nerve. If that doesnt work after "several" tries then they will do the procedure where they go up with a catheter and push scar tissue out of the way.

    My OS says that scar tissue has nothing to do with this nerve/leg pain and it is more likely that PT has aggrivated the S1 nerve root and inflammation is the cause of the pain. He has no comment to it being both sides at this point. He was not able to open the disk that the hospital gave me, so he didnt actually have anything to look at, he could only go from the report. He said he will take it home to see if he can open it there, if not I will need to request films again. His recommendation at this point is to stop PT, take is easy for about a month and take 900 mg of Neurontin daily and just wait it out. I have told him that every week it seems to get worse but he said again everyone gets scar tissue and the pain will go away and its nothing to worry about.

    2 doctors, in 2 days, with 2 totally different opinions, WTF. I guess I shouldnt have expected the OS to respond any differently,lol. I am just wondering if it would be better to get an opinion from a neurosurgeon or neurolgist as well. I really dont like the idea of stopping PT, but he wrote the script for me to be put on hold for now.

    What do you think?

  • Doesn't it get frustrating when trying to track down the source of your pain? I've been doing that for the past 6-8 months, too. It would be nice if each specialist treated us as a whole unit, rather than just looking at his/her little kingdom.

    I think you might as well have a consultation with another doc. Since it is really, really difficult to find a good neurologist, you might want to stick with spinal specialists, seeing a neurosurgeon this time.

    What you are learning is fairly common. Scar tissue (fibrosis) seems to be a controversial subject among spinal surgeons. Not that many are willing to admit it is THE cause of ongoing pain...at least in my experience, both personal and anecdotally!

    Don't give up. You'll just have to expand your search.

    xx Gwennie
  • Thanks Gwennie,

    He has said in the past "Look at my wonderful work". I dont doubt he did everything right. I just traded one pain for another. My back and leg pain was gone the day after surgery, I wont deny that. Now I am just getting really angry that I am being ignored like this. I know he isnt completely ignoring things its just I guess after 3 good months and 3 months of going down hill I am losing my patience,lol. I want immediate action of some kind, lol! OK, a prescription to help with pain doesnt really help the situation if things are being pressed on and wrapped around.

    Enough complaining, sorry!
  • You are right Zach, my OS did not get to see the actual MRI, so I have been keeping that in my mind. Thats funny you said that, I usually have my computer with me, but since I have been so unsteady I fear falling on top of it and really breaking it. I did fall once while I was carrying the computer and it went flying in the air (just like in the movies), thankfully nothing broke.

    I did however, send an email out to my brothers neurologist (movement disorder specialist in Philadelphia), he will speak to a neurosurgery collegue today to see what they think about the situation. Of course all totally unofficial. Unfortunetley they are 100 miles away if they want to see me, I max out at about 5 miles driving anymore,lol.

    We will see!
  • Well, I have been taking the neurontin for a week now and am up to the 900mg per day. I am not so spacey any more, but by the afternoon I look alittle tipsy,lol. I think maybe I have a slight decrease in pain while I am standing, but sitting and laying down is feeling worse. I know it can take 2-4 weeks to get the full effect, but these are just my observations for now.

    I am still waiting to here back if they have reveiwed the actuall MRI or not and waiting to here from the Neurosurgeon in Philly.

    I am left here worrying about pain/nerve meds and their purpose. Maybe I am crazy. Pain and tingling are there for a reason, it is telling my body that something is not right. If I cover it up, that does nothing for the actual problem, so how will I know if the damage is getting better of worse? I still have the appointment for the nerve block, but I am not sure if I want to do it or not. I think I would almost feel better in my mind having the pain and tingling so I can monitor and compare progression and changes. Does that make any sense?

    I just dont know,lol.
  • My opinion, get the nerve block, it might give you some temporary relief while you are seeking a second surgical opinion. It won't mask your symptoms for long and might be diagnostic as well, you know, the level that looks like scar tissue might not really be your problem level and the injection can help confirm or deny.

    Get a second surgical opinion. Getting some kenalog steroids injected might calm things down so you can bear it, but this is serious business, I'd go for another opinon. Don't let anyone tell you a SCS is your only choice. I know it's worked wonders for some folks, but make sure first there is no surgical intervention that can be done. Even if it's just to explore the fusion site-yeah, taking out scar tissue can make more scar tissue, but maybe something else is going on there that cannot be seen on films?

    Whatever course you go with, you have to feel good about it.
  • Thanks Ernurse, everything is just so frustrating. I am picking up a second disk later today to drop off at the doctors. I fell getting into the car today, totally lost my balance and went down twisting my ankle and hitting the curb. RIght on the main street in town, so embarrasing. So now I am resting with my ankle up. I cant freakin win,lol. My DH usually opens the door and makes sure I get in OK, this was the first time in a while he didnt, go figure.
  • If I could lift my leg up I would kick my OS in the @@@@@ so he could feel something tingle!!! He finally got back to me after 3 phone calls and says that he doesnt see ANY scar tissue on the MRI that is touching the S1 or the cord, and no reason I should have pain. His exact words are "everything looks great". OK, so I have a radiologist (who makes a living reading films), my PM doctor (who by the way is the biggest and most sought after in this area), and my PT (who is a doctor of PT), looking at the MRI and saying differently.

    So gosh darn frustrating. I have an appointment to go and see a NS but it isnt until the end of the month. I just feel like he doesnt want to have a blemish on his surgery record, not that scar tissue is his fault, I understand that.

    Guess more waiting,lol.
  • That is unbelievable. It makes no sense at all and it is amazing that 3 doctors can have different opinions. I've been following your story because they found scar tissue recently on an MRI and my doctor wants to do that procedure you mentioned. It's on the L4-S1 level where I had my TLIF last summer and my back and nerve pain are severe. I am scheduled for an ESI next week to hopefully calm things down. I'm sorry you're confused and frustrated and I don't blame you at all for feeling that way. I hope you get a straight answer out of all of this and also that your ankle heals up.
  • Hi Shell,

    I know exactly where you are at, as I am suffering from S1 nerve irritation since my ALIF last year in February. I had it immediately post surgery and my surgeon (who is great) said to give it some time to settle as he'd had to jack apart the two vertebrea 10mm, and by doing so had stretched the nerve that had shrunk down over time. So after 12 months of ESI's, x-rays, CT scans & MRI's, I'm finally looking at a decompression surgery to remove a plate of bone completely from that S1 nerve root. My surgeon said that although he can't see anything on the MRI, it is being caught somewhere there. The ESI's have proved that the S1 nerve root is the "problem child" and that something is ticking it off. There is scar tissue encasing it and one report even said that it is tethered, but he doesn't feel that those are the problem ??? Got me confused but I'm so over 12 months of constant cramps in my right calf, foot and thigh, the pins and needles and the tight knots of muscle in my calf that months of physio and hydro therapy can't shift that surgery is my only option.
    So I'm off to see my surgeon and his college, whom he has asked to go over the scans etc with him to see if there was something that he missed this Monday, and then schedule surgery from there. Finally, there is hopefully a light at the end of this long tunnel. My surgeon did say that this might not fix the problem, but at least I'll know I've tried everything. I'm back to wearing my post fusion brace some days as the pain in my lower back is making life a bit uncomfortable right now.
    The operation will be from the back this time and he said he is going to be taking alot of bone, more bone than you could on someone that wasn't fused as it would leave them with an unstable spine, so that sounds a bit freaky, but I trust him.
    I really hope you can get someone to take a second look at your scans Shell, I really feel for you as I know how frustrating not to mention painfull it is.

  • Thank you Meyday321 and RUNVS, at this point I am beyond frustrated. It is comforting to here that I am not the only one, although I dont wish it on anyone,lol.

    Meyday321, my ankle is still slightly sore, just a sprain, at least I think so. The curb scraped the skin but it doesnt hurt more than anything else,haha.

    What makes me the most angry is the fact that he wont even consider what other doctors are saying. What they are saying makes a whole lot more sense to me than what he is saying. I do trust him, it is just to the point that I am getting a "what do you want me to say" attitude. I also asked him about the nerve block and he said "no, it will pass with rest". Health care professionals must make the worst patients, I have enough knowledge to really question what I am being told, I admit we can be dangerous. I am not into waiting for answers anymore, I need to be back to work before June.

    Enough complaining, it doesnt help anything! Just need to keep pushing.

    Thanks all,
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