Re: New treatment for CRPS/RSD

[Guest guest]

I was emailing with my Pain Dr. about this treatment. In the US, the cost of

the procedure is approximately 60K. His wife's grandfather has neuropathy and

looked at it, but when they heard they would have to pay 60K, they couldn't do

it....understandable of course. The other downside is it only provides

approximately 5 weeks. As I said to him, when you are in severe pain, 5 weeks

can feel like a lifetime. Another great point he made is they do say less than

half got " significant improvement " however, they do not define what

" significant " means. As he asked, is this 2 points on a 10 point scale or more

than this?

If I hear more about this, I will definitely share it.

On another note, I am trying to get a Ketamine Infusion. It has also been

referred to as a Ketamine Coma. I will NOT be doing the Coma though. This is

only done in Mexico and Germany (I think). It is NOT FDA approved in the US (of

course). My insurance company has approved the procedure but not the

medication. To do this, I would have to have home health, a pump and the

medication. That would come to about 5K. However, I could also do this through

the office. The downside is I would have to go in to the office every day for

five days for about 3 hours each day. The upside however is my Dr. has a

patient that had the treatment and has been pain free for 3 years!!! Ketamine

is very inexpensive, so I am now looking at going in daily for five days.

I have CRPS in both upper extremities and in my left leg.

I had a stimulator for 14 1/2 years. It worked very well. I had to have it

replaced as the battery died and being that my unit was so old, they had to

replace it. I had the surgery last March and two weeks after surgery, ended up

with a Staph Infection. They had to remove the unit. I will not have it

replaced. Yes, it worked very well, however, I almost died. I will not put

myself through it again. They say what happened to me is extremely rare,

however, when it happens to you, it is not rare at all. I also ended up with 3

Pulmonary Emboli (blood clots in my lungs) and a DVT in my right arm. As my

pain doctor said, I am the poster child for complications. The two most rare

complications, and I had them!

I hope everyone is as pain free as possible!

Robin

New treatment for CRPS/RSD

Hey Guys

I know we have a lot of people here that have CRPS or RSD and wanted to share a

new treatment that I was reading about on the web that they have had some good

success with in the UK. Here is the link to the article if you want to read it.

http://www.dnaindia.com/scitech/report_new-treatment-for-chronic-pain-condition-\

discovered_1342355

Maybe this can help someone out!

Kim