Re: Neurologist app't tomorrow

[Guest guest]

hell sharon. hope you find some answers with this doctor. yep, some

doctors are scared of us when we tell them what medical problems we

have. i have beeen there. let me know how you made out. cathy

[Guest guest]

Hi Sharon, Good luck with your visit to the neurologist tomorrow. I hope and pray that he is a good dr. I think it is really amazing that so many people I know have gotten RSD from wrist surgeries. Sorry you had to be one of them. Don't forget to write down any questions that you might have for this dr so you don't forget anything. And don't ever leave a drs office without getting those questions answered. Take care and have a good night.

Hugs,

babs

Neurologist app't tomorrow

Hi all, I have an app't with a neurologist tomorrow. I am unsure what to expect from this visit. My GP recommended that I see him, in the hope that he may be able to shed some light on why I developed RSD after a rourine surgery.(I had a ganglion cyst taken off my R wrist)The last neurologist I saw seemed to take an interest in my troubles, but I never heard from him after out initial visit. This Dr. comes highly recommended by several Dr. friends I have. Thanks for any input, Sharon, NY

[Guest guest]

I am continuing to help my sister navigate through the initial few

months of RSD..I though my notes might be of interest to other people

who are early in the process.

Rhonda--

I found the article by Hendler, M.D., M.S. (director of

clinical research for the non-profit Reflex Sympathetic Dystrophy

Association and the director of the Mensana Clinic in son,

land) to be the best yet relative to overall explanation,

diagnostic methods, treatment, etc. It was culled from the RSD-

CRPSofAmerica files. Pls join via: http://groups.yahoo.com/group/RSD-

CRPSofAmerica You can opt to receive daily emails, ask questions to

the group or simply search the database...it's a great resource

There is a lengthy discussion of the Alcohol Drop and Swipe Test that

you had earlier today. There is also discussion about Sympathetic

Blocks, TREATMENTS: PROS AND CONS, MISSED DIAGNOSES AND ABUSES, etc.

It's essential reading with the following 2 paragraphs recopied for

emphasis. My understanding is that the diagnosis of RSD has been

more or less established in your case (early pain (since subsided),

decreased elbow mobility, darker, shiny skin color, increased hair,

redness in palm). This being the case, the next step appears to be

sympathetic blocks that will help determine whether you definitively

have RSD...and per Dr. Hendler " if done on a repetitive basis early

in the course of the disease, may actually cure the patient " . My

recommendation is to go forward w/ the sympathetic block series

starting next week as planned. Best to be aggressive in the early

stages.

Sidebar...I am curious why you are taking Neurontin if you don't now

have pain. I assume your no pain scenario is due to early Stage 1

status..? Dr. Hendler states: " Recently, some studies have

suggested that gabapentin (gg adds that this is the other name for

Neurontin), an anti-convulsant, may reduce the perception of pain in

approximately 50 percent of RSD cases. Additional studies to confirm

the efficacy of this drug will need to be done. Recall that Deborah,

the Founder of RSD-CRPSofAmerica answered my related question as

follows:

1)Is being on Neurontin part of being proactive?...does this help

mitigate long term affects or does this manage pain only?

.....It is my opinion and that of my doctors that it is a life plan to

be on neurontin. It is not as important for now but in the years to

come to be on an anti seizure med.

A couple of paragraphs from the article are copied below...

Greg

TREATMENTS: PROS AND CONS

Once the diagnosis of RSD has been more or less established, the

easiest and simplest treatment is a series of sympathetic blocks for

the affected limb. Usually, a patient will require no more than 12

blocks, which will help determine whether the patient has RSD,

whether there is a slow progressive steady improvement after the

blocks, or whether the symptoms return after the medication from the

blocks wears off, necessitating sympathectomy (surgical removal of

the entire sympathetic ganglia supplying the painful area).

Sympathetic Block

Older types of testing, such as sympathetic blocks, are based on

blocking the sympathetic ganglion, which is the cluster of

sympathetic nerves outside the spinal cord. These types of blocks, if

done on a repetitive basis early in the course of the disease, may

actually cure the patient. However, blocks require a skilled

anesthesiologist or other physician trained in the administration of

these blocks, and they can produce some painful side effects.

Moreover, there is always the possibility that the physician

providing the block might miss the sympathetic ganglia and not give

an adequate block. Additionally, with repetitive blocks (greater than

25 to 30), there is a risk of scarring around the ganglia, thereby

reducing the effectiveness of future blocks. The cost of a single

sympathetic block ranges from $350 to $600.

(go to the file for the rest of the article)