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Old 11-19-2010, 04:00 AM   #1
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scar tissue

hey, has anyone had this problem ?? i had a back op last year, and im really not improving much, im still on endone, neurontin, oxycontin and a few other tabs, so i can at least have some sort of "normal" life...i have just had a MRI and the scar tissue has encased the left exiting L3 nerve root, this explains the pain etc, I really would like some advice, as I just want to be normal again.....its really getting me down

 
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Old 11-19-2010, 08:19 PM   #2
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Re: scar tissue

What options have been presented to you? Scar tissue formation after any surgery is virtually guaranteed, but depending on the amount and location, removal of some tissue might be possible. If surgical intervention is not practical, that pretty much leaves you with pain management. There are numerous other medications that are effective at reducing nerve pain, though most of them were not developed for that purpose. Several anti-depressants, anti-seizure drugs, and anti-anxiety drugs may help reduce your pain to tolerable levels. I don't know what your Neurontin dosage is, but it is often not effective unless you are taking over 3,000 mg a day. If the Neurontin is helping you, you might be able to increase its effectiveness by adding acetaminophen (Tylenol,) as both act on GABA levels.

If oral medications don't provide adequate relief, you might benefit from Epidural Steroid Injections (ESIs) or nerve blocks injections. These may provide months of relief per injection.

You may also be a candidate for a nerve stimulator, or possibly and intrathecal pump (most commonly referred to as a morphine pump, though many different pain killers are usually used.) Brain stimulators are a last resort, with Deep Brain Stimulation (DBS) being the "last" last resort. But don't start thinking of last resorts right now, because there are many things that can be tried. Ask your doctor to list all the possible treatments, and then ask for the doctor's treatment plan.

Don't be surprised or upset if your doctor recommends a pain management specialist, particularly if surgery is not a reasonable option. Good luck, and please report back on what you find out. You shouldn't have to live in severe pain while there are so many possible therapies. Even things like accupuncture are worth considering.

 
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Old 11-20-2010, 05:38 AM   #3
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Re: scar tissue

Thanks for your quick reply, I will consider all options open to me, I have been told that another op will probably not be considered....I actually have been totally shattered, as I thought I would be back to working full time, and back to normal again....I really appreciate all the info you provided, as now I have some knowledge about what to expect....Guess now its time to tread a new path, although I don't have a clue yet.....The hardest part is accepting this and trying to stop feeling so down about it....thank you again, and I will let you know how I go, I see the surgeon again in 2 weeks.....

 
Old 11-22-2010, 01:29 PM   #4
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Re: scar tissue

[COLOR="Navy"]If you doctor has said no surgery oit is because if you have formed scar tissue that fast,if they go in to remove it, it will only increase exponentially. Some poeple produce more scar tissue than others-and there is no rhyme or reason why. As the other poster suggested, there are alot of things to try. I used accupuncture for a year and got a great deal of help from it. So keep your chin up, you are not without options....[/COLOR]

 
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Old 12-09-2010, 01:08 AM   #5
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Re: scar tissue

Hey, Went to the surgeon today, no operation to fix the problem, which totally shattered me, as I really thought that an op would fix everything.......he has suggested another nerve conduction test (pain plus), then as you thought a nerve stimulater, after another needle in back, which didnt work last time....im really at a loss, im not a sook and i have worked my but off before this happened....now I just dont know anymore..i dont think i have cried so much in my life....pain is such a hard thing to accept all the time....im really grateful for you info, so thank you i will try all other alternatives......but tell me is there some sort of normal life with this ?

 
Old 12-09-2010, 05:42 AM   #6
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Re: scar tissue

I am so sorry that you are experiencing such pain. Surgery could end up producing more scar tissue.

As far as the Neurontin dosage I listening to a pain specialist lecture and dosages of 1800 mg can be effective. Additional benefit of using doses greater than 1800 mg/day was not demonstrated. In fact the bioavailability of the drug decreases with increasing dosages.

Neurontin has been my best friend. It helped where narcotics did not. I have been taking it for several years as surgery was no longer an option.
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Old 12-09-2010, 10:46 AM   #7
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Re: scar tissue

Sorry to see you so disappointed. Constant pain sucks, to put it mildly. I was bed-ridden for a year and a half with constant, severe head pain, and I really don't know how I survived it without losing my mind, but I guess it shows how the human body (and mind) are incredibly resilient. My marriage suffered permanently, but my illness just exacerbated what had already been unresolved tensions. But I digress...

I recommend getting a second opinion from another surgeon (make sure you see a neurosurgeon, and bring all your CTs, X-Rays, and MRIs.) If the second doctor says you're not a candidate for surgery to remove the scar tissue, it's probably best that you accept it, and then start asking what can be done to improve your quality of life. You may be a candidate for ablative procedures like rhizotomy (removal of the nerve root,) cryosurgery, or radio-frequency thermocoagulation (the last two are methods of destroying the nerve root tissues.) However, you should realize that ALL ablative procedures run the risk of creating traumatic neuromas, which can be just as painful and/or may cause even larger areas of the body to be affected.

There are many medications that are worth trying, and in the coversations I've had with the dozens of neuralgia sufferers I've talked to over the past few years, Lyrica, Keppra, Tegretol, Trileptal, Cymbalta, and Klonopin (usually in combinations wih other meds, including Neurontin) seem to be some of the most effective drugs for reducing nerve pain. You should also consider using narcotics to help you cope, though they obviously have risks associated with them. I've been on many of them, and have found the fentanyl patch to be very helpful (many people find that the generic patches adhere to the skin better than the brand name Duragesic patches, and they are usually much less expensive.) The patches provide a more constant dosage of medication than oral narcotics, but you can use the oral meds for "break-through" pain once you've found the right doses of the other meds to give reasonable relief. There are even prescription pain "lollipops" that provide a very fast delivery of fentanyl to your bloodstream.

You already know that you are a candidate for a nerve stimulator, so I would recommend you discuss that with your neurosurgeon, as well as other options like an intrathecal pump, brain stimulation (deep brain stimulation is the riskiest, but there are also areas of the brain that can be stimulated with less risk, including the periaquaductal grey area, the anterior cingulate, and the motor cortex - which despite the name, also contains sensory nerve fibers.) The peripheral nerve stimulator (also called a spinal column stimulator, depending on the placement of the electrodes) is the least risky, and the trial is done on an outpatient basis.

For what it's worth, Jerry Lewis credited his neve stimulator with giving him his life back, so yes, you have a good chance at leading a normal or nearly-normal life again. There's no doubt that nerve pain can be very difficult to treat successfully, but almost every neuralgia sufferer can obtain significant relief. Much of your well-being is in your own hands, so don't be afraid to advocate fiercely and persistently (but tactfully) for your best possible quality of life. The best outcome usually results from a relationship of trust and frank communication with your doctor(s). If your doctor is not willing to accept you as a contributing member to your own health treatment team, fire your doctor and find another. It's unfortunate, but there are too many doctors who will not consider a patient's informed input, but here's a dirty secret: many patients know MORE about their specific illness than their doctor does, particularly if the doctor is not a specialist in that patient's illness. Do EVERYTHING you can to learn as much as your brain will absorb about your condition, and then find a doctor who will listen to you and give consideration to your comments and suggestions.

Finally, the first step to coping with serious illness is making the decision that you WILL do everything you can to cope. Then make a plan to do everything you can to live a full and active life. Find a support group (or even a close friend) to help you stick to your plan, and DO IT. You are not alone, and you deserve to live life as free from pain as possible, so don't give up.

I almost forgot (and I'm too lazy to re-edit these comments) - when you go for your second opinion, bring a written list of questions and concerns with you, along with a pad of paper and pen or pencil to write down your doctor's comments. When you make the appointment to see the doctor for a second opinion, make sure you tell the person scheduling the appointment that you have a few questions written down for the doctor, and ask that the appointment be scheduled with enough time for your doctor to discuss these with you. You do not want your appointment to be rushed; this is too important for you.

Oh, and really finally (honestly,) do consider seeing a pain management specialist, preferably one in a pain clinic setting - ideally one associated with a major teaching hospital. The field of pain management is growing rapidly, with advances and new techniques happening all the time. It can be very helpful to be connected with the the "leading edge" researchers.

Best of luck, and please keep us updated on your progress.



[QUOTE=mce;4638481]Hey, Went to the surgeon today, no operation to fix the problem, which totally shattered me, as I really thought that an op would fix everything.......he has suggested another nerve conduction test (pain plus), then as you thought a nerve stimulater, after another needle in back, which didnt work last time....im really at a loss, im not a sook and i have worked my but off before this happened....now I just dont know anymore..i dont think i have cried so much in my life....pain is such a hard thing to accept all the time....im really grateful for you info, so thank you i will try all other alternatives......but tell me is there some sort of normal life with this ?[/QUOTE]

 
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Old 12-10-2010, 04:36 AM   #8
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Re: scar tissue

Hey again, went for the nerve conduction test today, last one was in january 10, he was shocked and said to make another app with surgeon asap, as the nerves in my left leg were actually getting worse and not responding to electric shocks etc (he is now on my xmas list as ive seen him 3 times and will again in the future), so im guessing here.... that the scar tissue is pressing on my nerve and I will now have to have surgery again (surely that could not leave it)??? anyway have an app on the 22nd dec again with surgeon, so i will update...i guess the best thing to come out of this is its not in my head, as the pain was getting worse, and now i do actually know im not going around the twist.....thank you Jverive and everyone else, for you support, also i get more info from you than any doctor I go to !!...it helps a lot to know im not the only one....take care jan

 
Old 12-10-2010, 07:56 AM   #9
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Re: scar tissue

I'm glad to hear you have an appointment with your surgeon. As much as imaging can reveal, it does not show everything. It may turn out that you have something other than scar tissue compressing the nerve/nerves.

My leg pain was not resolved after my first fusion. For two years I was told it was scar tissue. My two surgeons, the one who performed the fusion, and the one I would eventually go to, both told me there were no surgical options, that it might be as good as it was going to get, and that I should learn to live with it. I was told to investigate a spinal cord stimulator.

I was convinced I had a mechanical reason for my pain so I keep pursuing other opinions. I'll spare you the details, but eventually I had another surgery. The surgeon was shocked what he found when he opened me up. Almost all my problems were coming from a segment that we all thought was only slightly "bad." The facet joints had deteriorated to the point that they were just little nubs, which allowied my spine to move in ways it was not designed to move...resulting in nerve compression. In reality I had very little scar tissue and what was there was not affecting the nerves. None of this was evident from all the imaging I had. My surgeon ended up having to perform major reconstructive surgery at L3-4 when we all thought my issues were at L5-S1...and yes, this was one of the surgeon's who initially thought my problems were stemming from scar tissue and permanent nerve damage.

My point is that even the best surgeons cannot always tell what's going on until he actually gets in there. I think you are wise to continue to look for answers...and, I hope you get them at your upcoming appointment.

 
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Old 12-13-2010, 03:44 AM   #10
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Re: scar tissue

Tetonteri66's message teaches a very important lesson that all patients AND doctors need to be reminded of from time to time. When interpreting the results of imaging studies and other diagnostic tools, a doctor's preconceived bias toward a given diagnosis can cause them to miss important clues. Once a doctor has framed a diagnosis in this fashion, it's difficult to keep from making further errors in a patient's care. Jerome Groopman explains this common problem (and several others) very clearly in his The book entitled "How Doctors Think."

 
Old 12-14-2010, 03:32 AM   #11
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Re: scar tissue

Thank you guys, It really helps to have your support xx

 
Old 12-14-2010, 09:10 AM   #12
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Re: scar tissue

Do you have an appointment with your surgeon? I have no idea how things work in Australia. Can you get in fairly soon?

 
Old 12-15-2010, 04:32 AM   #13
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Re: scar tissue

Im lucky as its workcare..otherwise it would be ages...I see the sugeon in a week....hopefully he will operate, I just can't even begin to think about living like this for the rest of my life....

 
Old 01-02-2011, 05:50 AM   #14
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Re: scar tissue

[QUOTE=jverive;4626659]What options have been presented to you? Scar tissue formation after any surgery is virtually guaranteed, but depending on the amount and location, removal of some tissue might be possible. If surgical intervention is not practical, that pretty much leaves you with pain management. There are numerous other medications that are effective at reducing nerve pain, though most of them were not developed for that purpose. Several anti-depressants, anti-seizure drugs, and anti-anxiety drugs may help reduce your pain to tolerable levels. I don't know what your Neurontin dosage is, but it is often not effective unless you are taking over 3,000 mg a day. If the Neurontin is helping you, you might be able to increase its effectiveness by adding acetaminophen (Tylenol,) as both act on GABA levels.

If oral medications don't provide adequate relief, you might benefit from Epidural Steroid Injections (ESIs) or nerve blocks injections. These may provide months of relief per injection.

You may also be a candidate for a nerve stimulator, or possibly and intrathecal pump (most commonly referred to as a morphine pump, though many different pain killers are usually used.) Brain stimulators are a last resort, with Deep Brain Stimulation (DBS) being the "last" last resort. But don't start thinking of last resorts right now, because there are many things that can be tried. Ask your doctor to list all the possible treatments, and then ask for the doctor's treatment plan.

Don't be surprised or upset if your doctor recommends a pain management specialist, particularly if surgery is not a reasonable option. Good luck, and please report back on what you find out. You shouldn't have to live in severe pain while there are so many possible therapies. Even things like accupuncture are worth considering.[/QUOTE]

 
Old 01-02-2011, 05:58 AM   #15
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Re: scar tissue

[QUOTE=mce;4652133][/QUOTE]
Hey. The surgeon is now going to give me a plastic disk replacement hopefully this will solve the problem. Do you have any info regarding this as I was a bit shocked at the time and didn't ask a thing

 
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