United Brachial Plexus Network, Inc.

Hi:

Claudia, the message from the guest above was from me.
I forgot to log in.

Jan
;
i am new to all of this, including this message board, but I would like to share a couple of things that I am currently experiencing.

First, it seems as though the local doctors where I live do not want to treat what has happened to me, which was described to me after surgery by the surgeon as a brachial plexus stretch, and confirmed by a neurologist.
The after effects of shoulder replacement surgert with my hand problems I guess is unusual. They either do not know how to deal with it or want to, and I think a little of both is true.

I have been told that sometimes it is hard to pinpoint "cause & effect" with adult bpi's. Jan, this was probably even more true 22 years ago.

Maybe a specialist of brachial plexus injuries would be the best place to start? I have just found one in Boston, but it took some hunting. I actually contacted a well known specialist for children, contacted him via email, and he wrote back with the name of a doctor. I have an appointment on April 12th.

I have a question. How much Neurontin were you taking? I am taking it too.

Thanks.

Jan - I just read your message again. I saw that the bpi specialist(s) won't see you? There must be someone. I understand your frustration. One thing for sure, people/doctors do not understand how hard it is to have a bpi. ((hugs))

Kath - I didn't go to a pain clinic as the one here actually paralyzied a lady & my doctor said he won't refer anyone there. Wouldn't you think in a town with a major medical center a person could find help? Dr. Belzberg is the specialist that my doctor has refered me to but Dr. Belzberg hasn't even gotten back to my dr. & it has been about 2 months since my records have been faxed to him. I just found the name of another in Pittsburgh which is closer to me so I'll give that name to my dr. DIANE - I started on 300 mg. of neurontin a day & then went to 300 mg. 2x daily. I can take it 3x daily but I haven't even tried that yet since I can barely tolerate it twice. I am seeing a pt twice a wk. which helps my rom from getting worse but that does nothing for the pain. THANKS TO EVERYONE WHO RESPONDED. It means a lot to just spill my guts to someone who understands. Has anyone found a drug other than neurontin that has helped? Jan

Diane, How much neurontin are you taking? How long ave you been on it & des it help you? It sounds as though we're in the same boat. What state do you live in? Jan

Jan, I know of Dr. Nath and Dr. Shenaq here in Houston, Dr. Kline in New Orleans and the Drs from the Mayo Clinic in Rochester, MN. I think all their info s in the Medical directory of this website. Good Luck.