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Spinal fibrosis- common, overlooked and underdiagnosed

so with an endless amount of time i have to be crippled in pain with what was known as arachnoiditis but now called epidural fibrosis, i find a study. a study that could should some light on undiagnosed back pain after surgery or simply a careless epidural injection. a back pain that can be almost in noticed it totally life destroying. please read this study and be informed. its not a good thing to have this. but it can clear up alot of confusion about the pain many of us end up with after procedures. 



  • smartens162smartens162 Manitoba, CanadaPosts: 449
    This is concerning me.  There was another related article there alongside that I looked at as well.  I have had a spine surgeon recommend an artificial disc replacement, but it is in Germany and that adventure will cost me (and a support person accompanying me) $50,000.  I've been told that the epidural fibrosis that is reported on the MRI will not be addressed, and yet they believe my pain issue will be relieved with the removal of the remaining ruptured disc and the implant of the artificial one.  The biggest thing that holds me back from pulling the trigger on this is: what if I do the ADR and find that the pain is still there?  My physiotherapist - tho not a surgeon, and technically not as knowledgeable - believes most of my issues are directly related to the fibrosis.
  • Sorry to hear that you're suffering in this way. Were you diagnosed with arachnoiditis or epidural fibrosis, or both? They are two separate conditions occurring in different layers that cover the spinal cord. Arachnoiditis is much more severe and debilitating. I found out I had scar tissue enveloping the nerve root after the second back surgery I had. The surgeon thought it was too risky to remove it, and offered me the option of putting in a pain pump. I agree that people need to be aware of the risks of invasive spinal procedures. Arachnoiditis isn't as rare as it's made out to be, but can be difficult to diagnose.  
    Ol' Spiney..Micro-D L4-L5, TLIF L4-S1 -post op central HNP L4-S1,stenosis, retrolisthesis, EF, facet arthropathy, lumbar& cervical DDD. FBSS- Medtronic pain pump & SCS
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  • I was diagnosed with "epidural fibrosis" four months after my L4-S1 fusion surgery in January.  I was not satisfied with accepting that I just had to "live with it".  I did research, and found a procedure called "lysis of adhesions or epidural adhesiolysis", and asked my surgeon if I would be a candidate for it.  Fortunately I was, and had this procedure in June.  Within 2-3 days afterwards, my symptoms from the scar tissue that had been encasing my nerve roots at L4-S1 had improved significantly!

    Meydey brought up a very good point about distinguishing between "epidural fibrosis" and "arachnoiditis". 

    I agree with you, Jersey--this is a condition that needs attention, but unfortunately, can be controversial because of the hints and allegations of legal liability (that little phrase "iatrogenic causes" packs a LOT of punch!).  I told my surgeon I was in no way challenging what he had done, as my fusion/instrumentation was healing well!!  What I did want was help and direction, as I was not about to put up with the grim prognoses I kept finding on the internet about the fact that nothing could be done about my "epidural fibrosis"!!  I'm just sorry that not everyone--like my dear friend Meydey--is a candidate for the procedure I had done to fix it.     
    Kimmy72, Spine-health Moderator
    Firm believer in PMA!
  • I think everyone can agree this scar tissue deal is getting out of hand. They know it's a common occurance while simutaneously ignoring the fact it's happening and have no practical means to combat the effects of the problem, let alone the actual problem itself. As for the fibrosis, I think there different stages of spinal fibrosis. Lumbar sacral epidural fibrosis is, from what I have read, arachnoiditis, or atleast, presents itself as arachnoiditis. It just has a different, perhaps, more precise way of presenting itself in medical literature. 

    I'm in the process of researching effects of PXE and Vit.E. I'm no doctor but I'm waiting for an answer from mine about this. Has anyone heard of this combination to fight fibrosis other than googling It right now as your finding out about it? Lol. 

    And smartens, I've read about that disc replacement before and it sounds awsome. Much more natural like. Your not locked in place. It still has that spongy feel to it. The way our backs are supposed to handle weight. With alittle give. But like you said, you can fix the disc, or the bone, but they have nothing for the scarring of the nerves. 

    I hate to cut you guys short but the cluster headache is kicking in from all this screen time. So I'm going to have to finish another time.  However,lysis of adhesions or epidural adhesiolysis, I believe had been proposed before, but like the ketamine insfusion, and basically all other special treatment operations, I can not come close to affording. And my insurance denies everything that isn't proven to work for what it's being prescribed for.
  • Hope you feel better soon with the cluster headaches, Jersey.  When you're able to return,  please do a search on here for "lysis of adhesions", or "scar tissue".  I found some older threads in there that mentioned the treatment methodology you are considering, but I don't think they were specifically titled "PXE or VIT-E", so you may have to poke around a bit. 
    Kimmy72, Spine-health Moderator
    Firm believer in PMA!
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  • Radiographically speaking, EF and arachnoiditis appear the same. However, epidural fibrosis occurs outside the dural sac, whereas arachnoiditis is chronic inflammation inside the dura, specifically within the arachnoid  layers of the spinal meninges. Adhesive arachnoiditis is the most severe form where the nerves become inflamed and adhere to each other and then to the dura. In the third stage the nerve roots are completed encased together by scar tissue, resulting in nerve atrophy and compression, and ultimately total obliteration of the dural sac ('empty sac' appearance). The subarachnoid layer's ability to produce spinal fluid is also compromised. The third stage of adhesive arachnoiditis is the absolute worst and most debilitating. 
    Ol' Spiney..Micro-D L4-L5, TLIF L4-S1 -post op central HNP L4-S1,stenosis, retrolisthesis, EF, facet arthropathy, lumbar& cervical DDD. FBSS- Medtronic pain pump & SCS
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