Home The Book Dr Articles Products Message Boards Journal Articles Search Our Surveys Surgery ESWT Dr Messages Find Good Drs video

What else is there?

Posted by cindyp on 6/15/00 at 21:03 (021889)

When I talked to this doctor the other day he said since the neurontin didn't work very well I may be out of options on that front. Is there anything else that will work?

Re: What else is there?

wendyn on 6/15/00 at 22:32 (021898)

Cindy - how long were you on it? Have you checked out the neuropathy bulletin board? There are a lot of folks on that board that use this drug. They seem to be well informed about dosages/side effects etc. A lot of them consider this drug to be the only thing that kept them from going over the edge. Maybe they would have more info on how long it takes to work or what other options are out there for serious nerve pain.

From what I understand, this drug seems to be the best in it's category. There are other drugs like Tegretol that are used the same way, but the neurontin is supposed to have fewer serious side effects.

Why can't the doctor's do anything about this tumor? Have they said? Will it ever go away?


Re: What else is there?

alan k on 6/16/00 at 09:58 (021913)

I would also like to understand this about the inoperability. Did they give you a detailed explanation?

You should go to the neuropathy.org site, where they will take good care of you, even though you have something different. I seem to remember some were taking elavil, but not sure about that. Also get a balanced B-vitamin complex, but watch out for overdosing on B-6. B-6 is especially good for the nerves but also can be damaging to them.

take care,

alan


Re: What else is there?

cindyp on 6/16/00 at 10:35 (021916)

Well they did give me a prescription for b-6. From what they said most neuromas are clearly defined and easy to see. Mine oh joy I am special, is not easy to see. Most look something like a small circle or knot or something. Mine looks like a long fuzzy blob between a bunch of other things. Their big mantra is if we go in there we can cause scarring of the nerves and if we remove you can end up with a larger mess than you now have. Whoopppppeeee. I get to be basically crippled for life with this mess. He being the doctor said it probably will not grow any bigger and there is a 60% chance it may go away. Even after 7 years I ask? I doubt that. Oh well.

Re: What else is there?

alan k on 6/16/00 at 14:34 (021930)

If you've recieved second and third and fourth opinions (I seem to remember you are on second at this point) and 1-4 can't suggest anything you can do to help the situation, then you might try alternative health strategies. Seems like acupuncture would be the first choice. Perhaps you could try that right away? It really doesn't usually have side effects, so far as I know.

alan k


Re: What else is there?

cindyp on 6/16/00 at 19:42 (021942)

Maybe the pain clinic will suggest that? The thought of being like this forever depresses me badly.

Re: What else is there?

Laurie R on 6/16/00 at 22:43 (021947)

Hi Cindy,
I think it is so good you are going to the pain clinic,I am sure they wil be able to help you .Please let us know what happens after you go.When is your appointment? My very best to you Cindy.
Laurie R

Re: What else is there?

alan k on 6/17/00 at 09:55 (021954)

The pain clinic sounds great. They may not be focused on anything but pain management though, so you would need to take things into your own hands and get a referral from whomever you need it from to get acupuncture. If you are interested in it, and I personally think you should definitely give it a good try, then you will probably have to take the initiative and see that you get it, yourself.

alan k


Re: What else is there?

wendyn on 6/15/00 at 22:32 (021898)

Cindy - how long were you on it? Have you checked out the neuropathy bulletin board? There are a lot of folks on that board that use this drug. They seem to be well informed about dosages/side effects etc. A lot of them consider this drug to be the only thing that kept them from going over the edge. Maybe they would have more info on how long it takes to work or what other options are out there for serious nerve pain.

From what I understand, this drug seems to be the best in it's category. There are other drugs like Tegretol that are used the same way, but the neurontin is supposed to have fewer serious side effects.

Why can't the doctor's do anything about this tumor? Have they said? Will it ever go away?


Re: What else is there?

alan k on 6/16/00 at 09:58 (021913)

I would also like to understand this about the inoperability. Did they give you a detailed explanation?

You should go to the neuropathy.org site, where they will take good care of you, even though you have something different. I seem to remember some were taking elavil, but not sure about that. Also get a balanced B-vitamin complex, but watch out for overdosing on B-6. B-6 is especially good for the nerves but also can be damaging to them.

take care,

alan


Re: What else is there?

cindyp on 6/16/00 at 10:35 (021916)

Well they did give me a prescription for b-6. From what they said most neuromas are clearly defined and easy to see. Mine oh joy I am special, is not easy to see. Most look something like a small circle or knot or something. Mine looks like a long fuzzy blob between a bunch of other things. Their big mantra is if we go in there we can cause scarring of the nerves and if we remove you can end up with a larger mess than you now have. Whoopppppeeee. I get to be basically crippled for life with this mess. He being the doctor said it probably will not grow any bigger and there is a 60% chance it may go away. Even after 7 years I ask? I doubt that. Oh well.

Re: What else is there?

alan k on 6/16/00 at 14:34 (021930)

If you've recieved second and third and fourth opinions (I seem to remember you are on second at this point) and 1-4 can't suggest anything you can do to help the situation, then you might try alternative health strategies. Seems like acupuncture would be the first choice. Perhaps you could try that right away? It really doesn't usually have side effects, so far as I know.

alan k


Re: What else is there?

cindyp on 6/16/00 at 19:42 (021942)

Maybe the pain clinic will suggest that? The thought of being like this forever depresses me badly.

Re: What else is there?

Laurie R on 6/16/00 at 22:43 (021947)

Hi Cindy,
I think it is so good you are going to the pain clinic,I am sure they wil be able to help you .Please let us know what happens after you go.When is your appointment? My very best to you Cindy.
Laurie R

Re: What else is there?

alan k on 6/17/00 at 09:55 (021954)

The pain clinic sounds great. They may not be focused on anything but pain management though, so you would need to take things into your own hands and get a referral from whomever you need it from to get acupuncture. If you are interested in it, and I personally think you should definitely give it a good try, then you will probably have to take the initiative and see that you get it, yourself.

alan k