hello to all and A "VERY HAPPY 4th. Of July to all you wonderful Friends"!I am going to "Light up the sky"(Just kidding, my son takes care of this every single yr. He has some heavy duty fireworks.. can't wait to see em! Asked me if I was gong to go swimming there, I said;"Billy, only if your water is hot"! ) I received a call a little while ago from my surgeon who did the carpal tunnal surgery(This is how I ended up having RSD ) ok.. he and my hand/ wrist specialist went over my bone scans, MRI's, plain x-Rays.. and what this specialist wants to do, is take a vein out of my left leg, transfer it to my right arm! I am like what??? In other words he wants to fuse all the ligaments, nerves, blood vesseles, with a single vein??.. blah blah together! I am scared, I told my ortho. He said when I go back to the specialist to tell him of my fears, anxieties.. etc. What would you all do, as I really don't know if I want this surgery done! TIA(Thanks in advance) Love, Desi

Oh, Desi,
I wouldn't even know where to start with that one... But it doesn't sound like a procedure that a RSD patient should have. I could be totally wrong... But..
Doesn't RSD/CRPS have a better chance to spread when you have surgery? Especially with the nerves... I'm so new to RSD so I'm sure someone will come along and correct me if I am wrong....
Have they done this same procedure with any other RSD/CRPS patients and if so what has the outcome been and can you talk to them?
Maybe you can get a second opinion even if you have to travel... If it were me I would do a second oppinion...
Best of Luck...
Dawn &

Desi,
Bless your heart, it sounds scary. I don't know what to tell you. There must be some reason he wants to do it that way. Sit down with him and have him explain everything to you. For now, just enjoy the 4th, relax, and if the water is warm enough,,,swim..You deserve the best treatment, and maybe,,,this will help.
Love, Mary

hey desi,

like the others i have absolutely no idea what to say about a procedure like that. you have always been so kind to respond to my posts that i wanted to make sure you knew i was here to lend an ear. unfortunately, that's about all i can lend at this point. my only advice would be to do lots of research on that particular procedure and make sure to get a second opinion and last but not least listen to your gut instincts! i'm sorry i couldn't be more help, desi, i hope you get the answers you need and know that we are here to support you no matter what you decide. hope you have the best day possible and enjoy your fireworks and your family jen

desi,

i was sent to a specialist several years ago and he discussed this surgery too....he called it a 'nerve wrap'....at the time it was brand new and considered experimental....there was no talk of 'fusing'.....the idea was to wrap the affected nerves in the vein to protect and sort of cushion them.....when i questioned the success rate (and i really had to push to get answers) i found out that of the surgeries of this type done at that time, one third of the patients had good results, one third had no change and one third were actually worse - i assume that would include any who had developed rsd or had rsd spread as a result of the operation.

i needed more than a 33 percent chance of improvement to take the risks involved, so i never went back to the surgeon......it might be worth your while to insist on hearing the numbers and exactly what they mean.....i never did find out what 'good results' indicates.....maybe any minor improvement is considered 'good results'.

please don't make any decision without having ALL the facts at your disposal.

good luck!

liz

Desi,

Please be very cautious about this proposal! A second, even third opinion is in order for your own safety.

EJ

make sure you do not say yes or no the day you go. take time to get the exact name of the surgery, and then do your own research, and i agree with the others ... ask how many he has done and what his success rate is, and then ask what the national figures are. many docs are looking for a good guinea pig. make sure you are not one. trust yourself not him.
all my best joan

Hey Desi,

Have you considered a second opinion? This sounds a bit dangerous!! Please consider a second opinion before having the surgery - RSD is bad enough before any surgeries, but please, please think about it!

Love you so much and thanks for being an amazing friend - hope you enjoyed the fire works!

Love ya

Froggsy xxxxxx

Hi Desi, There sure are alot of tough decisions to make when you have RSD. I hope you don't mind that I put in my 2 cents here. I was faced with the "to have or not to have surgery" on my rsd limb last year at this time. Fortuneately for me, both ortho doctors I went to knew the dangers of operating on an rsd limb. Neither one would touch it unless my rsd went into remission which it never did. So, I went to the various rsd sites and did my own research on the subject of surgery on an rsd limb. Every site I went to confirmed what the doctors were telling me...it is too dangerous and is usually done only in emergency situations such as gangrene. Even then it is done with great precaution ie. nerve blocks before and after surgery, epidurals etc. etc. It might be helpful if you could print out what the rsd sites say on the subject of surgery and bring them with you on your next doctor visit. If they won't listen, that's not a doctor that you want. The decision, of course, is yours to make but please be well informed before you make it. Hope this helps you. Jeannie

Hi Desi,

I was also talked to about possibly having this procedure done. I have a serious narrowing in my upper arm - my RSD arm. In my case, they thought that it would increase the blood flow down my arm. I did not have the procedure - thank God. They did agree that it was too risky.

Have you had a venogram done? They may want you to get this done. Be careful. When I had mine done, I ended up with a blood clot - in the hospital and on blood thinners.

I agree with what others are saying. I would get another opinion.

Good luck.