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06-25-2013, 09:39 AM | #1 | ||
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I brought this up before and got fairly negative response. Since then I was sent to Strong memorial in Rochester NY. to consult with a specialist. I told him I already decided against the biopsy but he was pretty convincing and now I have to decide.
He said he was the only nerve specialist in the region and he was very confident. He wants to take out almost an inch of nerve off the side of my foot.(said it was an insignificant spot) he said looking at this under a microscope is the only way to get a true diagnosis that could lead to treatment. He even went as far as to offer me a repair of the nerve he would remove. By connecting the nerve ends with some kind of shunt. he told me he does not usually offer this, and it works 60% of the time. He is a surgeon who does over 100 nerve repairs and transplants a year. So I sit here thinking, without intervention where will I be in 5 years. The thought of sacrificing a small section on nerve to possibly stop the progression of this is appealing. I asked him if he had any suspicions of what I may have and he said "Yes, but I'm not going to tell you". I feel I made a bad decision to have the nerve block last year, but I kind of feel that after all the doctors who have guessed, this is more specifically targeting PN. (any experience with this) |
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06-25-2013, 09:43 AM | #2 | |||
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Wisest Elder Ever
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I've never had a biopsy, so I really cannot advise you.
Some others may come on here. I believe however that all it will show is that you have axonal damage. This is not really going to say WHAT is damaging you however. I'd Google some more. It had been my impression that this sural biopsy is not done much anymore. Maybe Glenn will come on with more information. He has had the skin punch biopsies more than once.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says: | Stillfighting (06-25-2013) |
06-25-2013, 01:08 PM | #3 | |||
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Senior Member
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Quote:
I was diagnosed with sensory motor axonal PN via emg/ncs and was referred to Columbia Presbyterian Neurology for a further workup. The first thing they wanted to do was a nerve biopsy. Thankfully i found the PN support site that was where the long term posters to this site were prior to going for the biopsy and as a result was tested correctly without the permanent damage which would have been done by a nerve biopsy. If it were me i would do my research on nerve biopsies and if the doctor still refuses to tell you what he is looking for or suspects I would move on. |
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06-25-2013, 01:59 PM | #4 | |||
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Wisest Elder Ever
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Thanks, echoes...
Here is book link... http://books.google.com/books?id=56q...ed=0CGMQ6AEwCA Sounds like a money maker to me! Ask your doctor these questions: How many of these have you done? What will it show, and how will you then treat the results? Did you do a nerve conduction on this nerve already? Was it normal?
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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06-25-2013, 02:18 PM | #5 | |||
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Senior Member
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I have had the sural nerve biopsy...back in '97. It is NOT done often anymore according my neuro at Hopkins.
I can only relay my experiences and what you may encounter might be different. The procedure of course completely severs the nerve so anything below the area will be numb...guaranteed. I did not have the option for any re-attachment with shunt, so don't know the outcome of that. I also experience significant phantom pain that can (and was) disabling. This lasted for almost a year but did lessen slowly over this time period. To this day I have no feeling from the back of my calf down & around the outside of my foot. Have I gotten used to it? Yes, but it took a while. I did not have the punch biopsy before the nerve biopsy, and frankly don't think it was widely used at this time ('97). I have since had the punch biopsy twice and suggest you at least ask your doctor WHY he's not considering this first since it's less invasive and provides sufficient information for diagnosis of SFN. The sural nerve biopsy may provide similar results that a punch biopsy would but neither will tell you what is causing it. I also don't know if the nerve biopsy can actually confirm SFN because they are not looking at the small fibers. Mine (nerve biopsy) showed axonal degeneration, but like MrsD said, it doesn't show why and from what. Did you ask him about the punch biopsy? What was his reply? Do you have positive EMG or NCS that would indicate large fiber neuropathy? |
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06-26-2013, 07:34 AM | #6 | ||
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Magnate
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--as the others here have said, is really only now for very special diagnostic suspicions and indications.
Because of those indications it should also involve a biopsy of muscle tissue as well. In general, at the very least, it will leave some areas of patchy numbness. That may be worth tolerating if you get a definitive diagnosis and a treatment plan. But, some have reported the standard post-operative complications of surgery (infection, etc.) and the fact that the doctor has a suspicion but doesn't want to tell you is rather disquieting. Take a look at this--it's a very comprehensive look at how/why a nerve/muscle biopsy might be performed: http://neuromuscular.wustl.edu/nother/bx.html A lot of the more common diagnoses, though, might be made with other testing. In my estimation, only a few of the diagnoses listed, mostly very rare ones, quite a number of them hereditary, would require a nerve/muscle biopsy for confirmation. So it would be good if that doctor told you what was being looked for. |
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