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Old 08-11-2008, 05:26 PM   #1
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laurencw HB User
Extensive Epidural Fibrosis on nerve root

Hi everyone!

I'm a 22 year old female who had a L5-S1 fusion just over a year ago. Other than my back I am in great shape. At first I thought I was doing great but a couple months into the recovery I started feeling the same sort of pains I had felt before the surgery. After a round of CT scans and MRIs they have discovered that I have extensive epidural fibrosis on the transversing nerve roots and that I still have anterolisthesis of L5 S1. Honestly I'm pretty upset over the whole thing.. It is next to impossible to get any answers from my surgeon.. who has NO empathy whatsoever and who my mother can not stand.. and I feel like I'm trying to find out why I'm hurting so much while none of the doctors seem to care!

I was wondering if anyone has had a similar finding and what the solution was? My family doctor is trying to refer me to a second ortho spine surgeon but they are so few and far between. I'm really frustrated and I am kicking myself for having the surgery at this point!

Thanks so much for your help!

 
Old 08-11-2008, 09:15 PM   #2
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Join Date: Nov 2007
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mznell HB User
Re: Extensive Epidural Fibrosis on nerve root

Hello,

I am really sorry to hear you are having these problems after surgery. There is quite a bit of information about epidural fibrosis available online. This condition basically is scar tissue that is growing around and enveloping some of the nerve roots, resulting in the pain you are experiencing. I imagine your surgeon is showing no empathy toward you because he doesn't have a solution or even a treatment to present to you. Why you still have the anterolisthesis after the fusion is a better question. Did you have instrumentation like rods and screws?

It doesn't sound like you will get any further with your surgeon. I hope you will be able to find another spinal specialist that you can consult with.

 
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Old 09-09-2010, 04:32 AM   #3
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Light1000 HB User
Re: Extensive Epidural Fibrosis on nerve root

I had been in the same boat, so i hear you! In fact, my first surgeon (a neurosurgeon) was such a nutjob that the anesthesiologist actually came to my bedside in the hospital the morning after my first surgery to tell me that he had to report my surgeon to the hospital's ethics committee for wrongs committed during my surgery, but then told me that "the conversation never happened," so that in the event of medical malpractice lawsuit against the surgeon later, the anesthesiologist would not be willing to repeat what he said to me in my room in privacy.

Now I advise all patients to have a tape recorder on in the hospital at all times - you never know when it can come in handy.

Shame I didn't see your post until now, years later. Wonder how your project went, finding a new surgeon.

For me it was hell. There was only one spine surgeon (and I can't tell you the sheer number of spine surgeons I tried - I went national) for follow up diagnostics.

He must have really botched my fusion because 6 weeks later, I was begging to be put out of my misery. I could not walk, sit stand or lie down. the pain was crippling. He called me a hysterical wench, until I saw a neurologist who confirmed that the recent EMG showed that something irreversibly bad happened to my nerves during the fusion (fascinating, but my intraoperative SSEPs - somatosensory evoked potentials - a test that some surgeons use to make sure that surgery is not damaging the nerves) vanished. Neither the company who did the monitoring, nor the surgeon, nor the hospital seems to know what happened to them.

In any event, only after a neurologist could bring objective proof to support my "crazy" notion that I could not sleep from pain did my second nutjob surgeon consent to giving me a myelogram. Catch this: he's screaming and yelling at me the whole time I'm on the table - I am in agony having to lie still for this test - and just as he tells me, 'There's nothing wrong with you,' he says, 'wait - move the carm a little further to the right. Holy ****! I had no idea your s1 nerve passes so far laterally! (Given the fact that he gave me a prefusion myelogram, and the prior spine history I have, you'd think he'd know the exact contours of my S1 nerve progression! but no! Why be thorough and detailed before spine surgery?!) In any event, suddenly, he proclaimed, "You need immediate spine surgery! I can't see your S1 nerve anymore. Something is blocking the dye from moving through it."

Turned out, wads of scar tissue were wrapped around the S1 nerve and had tied it to a bone surface - which surface, I don't know - because this guys OR report is pretty vague about it. The point is: this scar tissue was a theory I had presented to him in the very beginning - from the neurologist who had been doing my EMGs - only to have this surgeon scream on top of his lungs, 'WHATEVER THE PROBLEM IS IN THE SPINE IT CAN NEVER BE SCAR TISSUE.' And seemed confident about this statement based on spine studies he allegedly read. After the bungling job he did, I researched PUBMED and never found a single study that matched his description. In other words - he likely lied. the reason, I believe now: he made a bit more money on a fusion than he would have on a neurolysis surgery, which is what I needed all along.

Instead, by applying mechanical pressure to the spine from the front, during my anterior fusion (no opening in the back) he managed to further damage a nerve that was firmly anchored to a bone in the back of my spine, leaving me now in crippling pain.

This second surgeon had wall plaques to die for: he, like the first one, one of the region's "top spine surgeons," with Castle Connellies hanging on his wall for every year since 2000. Ivy League medical school.

Then I found out from a neuroradiologist who had attended this guy's medical school that neuroradiology is an ELECTIVE SUBJECT in that medical school: meaning this: when a spine surgeon insists on reading the original MRI, do NOT assume that the guy has specialized training in MRI-reading. My guy couldn't see gobs of scar tissue, which, apparently, a well-trained chimp could have seen on my MRIs.

I tell you my story so you understand that even when you find the holy grail: the second surgeon, know that you might be in the hands of Dr. nick (ever see the Simpsons?). Dr. Nicks masquerade these days with some very fabulous credentials.

Meanwhile, I discovered that acupuncture, when performed by a very knowledgeable and experienced Chinese Medicine doctor works brilliantly for most patients. (Consult the specialized research performed by the MAYO CLINIC physical medicine experts at Mayo's Florida campus if you don't believe me. I thought it wacky, too until it helped). The only problem is: every incision into the spine makes acupuncture less likely to work. And that is my problem. I trusted the "wacks" (Surgeons) over the "quacks" (acupuncturists).

There is no better treatment than acupuncture for my neuropathic pain. The scar tissue is still there - so entrenched that it cannot be removed without the risk of paralysing me. To get that truth I needed to travel 6,000 miles from home and consult an ortho surgeon off the record, in a restaurant with my MRIs in hand. There is no way anyone is willing to go on record over this stuff - even if you manage to go halfway around the world for a diagnosis.

There is promising results from IV antioxidant treatment. There is acupuncture. Drugs don't really work - we all know that. they just make you stoned - which makes everyone happy: the more stoned we are, the less likely we are to be able to assert ourselves against the doctors who ruin our lives.

The answer is only ever going to come from someone not driving a BMW or with blood on their hands. And that's the God's honest truth, as the nasty reality about scar tissue is this: it is inevitably going to come back. That's the body's way of closing holes - and it is wholly science fiction to think the spine is exempted from this rather normal and natural physiological process.

If you ever need laminectomy, make sure a microneurosurgeon does the closure. I found studies that show that the scar tissue is far less nasty when the surgeon knows good technique. this should be self-evident to the surgical community from what we know about plastic surgery - but apparently, nothing that is commonly known about connective tissue is all that evident to those wacky spine surgeons.

And about the lingering biomechanical issues you have post-fusion: take the guy to the cleaners. Apparently, he doesn't even know how to position a body during fusion - the most basic of basics in spine surgery!

Let no scalpel touch your spine. Credentials are easy to get these days. And talk is real cheap.

Take really great care of yourself - lots of DHA (special fish oil in the Omega 3 family), avoid all margarine and fatty foods (these promote tissue swelling), and consider all alternative treatments because what is regular for treatment is also torture and should be illegal.

I hope this helps. (By the way, there are some surgeons I am sure, who are very good. Unfortunately, the only way to know if yours is one of them is after it's too late! That's why the interview process should involve former spine patients in the waiting area. If there aren't any, then head for the hills. And if there are constant repeat clients, also head for the hills. You want to be able to graduate from patient care, instead of majoring in it in this lifetime!)

Regards!





s

 
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