[dgarcia]

I've read that the treatments include medication, physical therapy psychological support, sympathetic nerve blocks, and or spinal cord stimulation. He's done everything but the spinal cord stimulation. I think he's afraid the doctor will make it worse. He had a cyst growing in his arm. He went in because he thought they were gonna drain it but the doctor told him he wanted to surgery because it was too deep in his skin. He went in for the surgery and the doctor cut a nerve. He ended up with nerve damage and the condition rsd/cprs. He had to have 4 emgs to determine he had nerve damage. I'm just trying to find something that will ease the pain and or help him. He says the pain is worse now after going in for the nerve block. Also, we're finding it very difficult to find a doctor who understands. Does anyone know of any good doctors that can help with CRPS/RSD?

[alaska49]

Where are you located? I know where a lot of the best docs are either from my own experience as I have seen nearly 97 in 10 states or my friends experiences. I am sorry to hear what happened to him, my RSD to was caused from a surgery and the doctor cutting a nerve. If the nerve blocks caused pain, they may not help at all for him, I have a friends this happened to that the nerve block actually made things a lot worse than they were. Is the RSD still in the arm or has it started to spread? The choice to have the stimulater will have to be his as evern person reacts to it differently, for me the 4 week trial really helped a great deal, it was the permanent that didnt but I also have my RSD full body and internal. I have heard when it comes to it just being in one or two limbs it really helps. Its really great you are there and helping him, the support from loved ones really is important to keep him going. What all meds has he tried and are any helping? When was the surgery? There are a few more treatment than you listed such as the implanted pain pumps, the lidocaine and ketamine infusions most of these are mainly for the ones nothing else has worked or are pretty severe already. I truly am sorry your boyfriend has to go through this painful disease, I myself have had it for 5 years, with 2 year it being full body and wouldnt wish this on anyone. If I can be of help in any way please let me know!

Niki

[dgarcia]

The pain spread to his wrist a few days ago and he didn't really think anything of it until this morning when he took some Motrin and the pain didn't go away. I asked him about the medications and he's said he's taken several different kinds. He took Lyrica back in Dec. of 07 but he said for the first few months it felt fine but then the next few it felt like it was messing with him mentally. He said it felt like he was losing his mind. The surgery where the doctor cut the nerve happened Dec. 19, 2007. This recent surgery was a nerve block that was entered through his spine and his neck but like I said he said it feels like it made the pain worse. The nerve block was Sept. 3rd, 2009. I posted on another site as well and this was the response I got.

"Seriously, I would highly recommend a trip to Australia to see David Butler and his group of experts. This team has a very unique, innovative approach to nerve pain. Time to seek out the best in the world.

Dr. Christina Lasich, MD"

I'd love as much help as I can possibly get. Are there any doctors in the USA or closer that are any good? Do you have any suggestions to help with the pain each day? We'll take anything. I hate seeing him in so much pain. Thank you so much.

[dgarcia]

[quote="alaska49"]Where are you located? I know where a lot of the best docs are either from my own experience as I have seen nearly 97 in 10 states or my friends experiences. I am sorry to hear what happened to him, my RSD to was caused from a surgery and the doctor cutting a nerve. If the nerve blocks caused pain, they may not help at all for him, I have a friends this happened to that the nerve block actually made things a lot worse than they were. Is the RSD still in the arm or has it started to spread? The choice to have the stimulater will have to be his as evern person reacts to it differently, for me the 4 week trial really helped a great deal, it was the permanent that didnt but I also have my RSD full body and internal. I have heard when it comes to it just being in one or two limbs it really helps. Its really great you are there and helping him, the support from loved ones really is important to keep him going. What all meds has he tried and are any helping? When was the surgery? There are a few more treatment than you listed such as the implanted pain pumps, the lidocaine and ketamine infusions most of these are mainly for the ones nothing else has worked or are pretty severe already. I truly am sorry your boyfriend has to go through this painful disease, I myself have had it for 5 years, with 2 year it being full body and wouldnt wish this on anyone. If I can be of help in any way please let me know!

Niki[/quote]

The pain spread to his wrist a few days ago and he didn't really think anything of it until this morning when he took some Motrin and the pain didn't go away. I asked him about the medications and he's said he's taken several different kinds. He took Lyrica back in Dec. of 07 but he said for the first few months it felt fine but then the next few it felt like it was messing with him mentally. He said it felt like he was losing his mind. The surgery where the doctor cut the nerve happened Dec. 19, 2007. This recent surgery was a nerve block that was entered through his spine and his neck but like I said he said it feels like it made the pain worse. The nerve block was Sept. 3rd, 2009. I posted on another site as well and this was the response I got.

"Seriously, I would highly recommend a trip to Australia to see David Butler and his group of experts. This team has a very unique, innovative approach to nerve pain. Time to seek out the best in the world.

Dr. Christina Lasich, MD"

I'd love as much help as I can possibly get. Are there any doctors in the USA or closer that are any good? Do you have any suggestions to help with the pain each day? We'll take anything. I hate seeing him in so much pain. Thank you so much.

[alaska49]

So where are you located? As for the nerve blocks you need to stay away from them from now on, it doesnt happen to many but for some it does make it much worse. I know how he feels about the lyrica, I didnt have a good reaction with it either, has he tried neurontin? It didnt help me but for many it does. I really wish I could give you the best advice as what could help the everyday pain, but I myself havent found that answer I do just the best I can to get by everyday. Is he on any pain meds like opiods or any thing? These are the meds I take but like I said what works for one might not work for another. Demerol 100-150mg 4x a day, baclofen 20mg 4x a day, keppre 500mg 3x a day, oral ketamine 50mg 4x a day. I am also doing the low ketamine infusions which I get 250mg once a week, this has been the treatment that has really helped and gave me more of a life back. Out of the tons of doctors I have seen, my currant doctor is doctor Getson and he is in marlton NJ, he is a collegue of Schwartzmans that brached out. There are many other good docs I know of in other locations, so if you let me know where you are maybe I can find one closer to you. If you want to e-mail me directly my e-mail is [moderator note: e-mail address has been removed].

Niki