Hi, I currently have not been diagnosed with RSD, but I do have some of the symptoms. What I am concerned about at this time is the fact that I am going in on Oct 23 & 25 to have TOS surgery on my right AND left side. Is there anything I can do to try to reduce the possibility of ending up with RSD? I love you guys, I read here quite a bit to get info on pain control etc., but I really don't want to join your club. No offense, but I don't have the courage to pay the membership fee.LOL Any advice here would be greatly appreciated.
Tracy

Hi Trix,
Oh dear, sorry to hear what you're going through - others have been through similar, sure they'll be along later to help out but...you have joined the "club" or forum if you're posting.

Membership fees? No such thing here, you just come in, hunker down just like you've done, and get real comfortable.

Unless that was wit I detected i.e. the "RSD Club Membership fees" as in "high price to pay"?

Some suggestions for surgery have been grape seed extract, Vit C in industrial amounts, Vit E some special type...(actually add all those up and that's one expensive pharmacy bill anyway ).

So glad you're here, others know much more than me about this, I'll skidaddle,
Take care now, all the best.

Hi trix,

I hope you don't end up on this forum either, no offense intended.

From what I've been told, the best way to end up not spreading tos into rsd is to have a block before your surgery. A stellate ganglion block is said to help stop rsd from spreading when you have surgery.

Maybe soneone will come a long who has had a block prior to surgery.

I'll say a prayer for you that rsd will NOT rear it's ugly head post op. I know you got lots of help at work, but hope you have lots of help at home too

Take care...........Hope

Trix,

I understand about you not wanting to join our "Group" here. LOL, I am a member, and wish I didn't have to be! So, no offense taken, none at all. But, like Artist says, all you have to do to be part of our "family group" (in contrast to "The Group" that no one wants to be in...LOL, if that makes sense? Probably not...) is to post!

That said; Welcome to then Group! Hope you don't become a member! ROFL

I don't know a whole lot about TOS. I do go and lurk on that board, and have for a few years now, as my Mom (and me too...she just has LOTS more) has some symptoms of TOS. So, I try to read and keep up somewhat. But, I still am not very knowledgeable by any means.

I do know that there are different surgeries that are done for TOS. Right? I get lost with all of the jargon that gets talked about, and the abbreviations for the different parts/muscles/whatnot that are affected by TOS, or operated on, etc. (not that I am good with the full names of the parts involved, as I don't know a whole lot about anatomy. So, I get very lost reading posts there most of the time. I just muddle through as best I can. LOL).

All of that to say...What kind of TOS surgery are you having? This isn't the one that the docs seem to like to do sympathectomies (sp?) during, is it? That is the ONE HUGE thing that I can tell you to stay away from: Sympatectomies! Or, anything that severs nerves. If you think that you might have RSD at all, then severing nerves is the WORST thing that you can do. Or, at least that has been my experience, and the majority of experiences that I have read/heard about with RSD patients. Sympathectomies used to be used to "treat" (worse, some docs would even say "Cure"...NOT!) RSD. They have since been found to NOT be the thing to do, and in most cases, can make Pain/SX worse. Even if right after surgery there is an intital decrese (or total absence) of them. Given time(varies from person to person as to how long), the pain ans sx come back, and usually with a VENGEANCE!

So...if yoru doc as talkeda bout doing a sympathectomy...I would serious (very seriously...can't stress that enough!) consider telling him to skip that part. In fact, there would be no "consider" to it on my part. I just would not have that done.

Ok...off of the sympathectomy stuff...

I know that TOS patients use LOTS of Ice. I believe that using Ice is basic protocol after a TOS surgery? If you have RSD...Ice is an absolute No No! It slows down circulation (that is why it helps with swelling..right?), and that is not good for RSD. Also, the ice actually hurts the nerves in RSD patients, and can cause spread. There are RSD patients that can tolerate Ice (I myself am not one of them...it HURTS!!!!!), but that doesn't change the fact that Ice is a complete and total NO NO for RSD.

I don't know what to tell you about that, since you don't have RSD dx, and I know that Ice on the incision site is normal procedure for most everyone else. I will tell you, if the ice HURTS...get it off of there ASAP and DO NOT use it again. You can instead use "Cool" or "Cold" packs...things that refrigerator temp and not Freezing, to help with swelling.

As Hope said...blocks would be the thing to get before surgery for RSD patient. SGB's for both sides before and after surgery would be a good way to go if you were for sure RSD patient. Since you aren't sure....maybe the blocks before, at least? Would your doc be willing to do that for you? Sympathetic Blocks done to try to "trick" the sympathetic nervous system and get things simmered down before they even start?

Would you windup in any kind of cast, or have your arms/shoulders immobilized in any way after the surgery? If so, for how long? Casting and immobilization are other big No No's for RSD patients, and things to be avoided....IF at all possible. Sometimes, it is not possible (as in when a bone is broken or whatever, and casting HAS to be done). "Move it or loose it" is a big thing with RSD. Muscles atrophy and joints "Freeze"...and things just can go all haywire if RSD parts are kept immobile for too long. If you DO have to do this, then try to move parts...gently and slowly asap once you are able to.

Do you have a good Pain Therapy PT place? No Sports Medicine kind...but one that deals with Pain patients and doesn't go by that awful "no pain, no gain" crap? If not..please try to find one before hand?

Erm....?? I don't know what else? Hopefully someone else will come along with more advice, or to correct things that I might have gotten wrong (I have a very rusty brain these days....and would forget my head if it weren't connected! LOL). Hopefully someone that has more experience with Upper RSD? Mine started out in my rt foot...traveled up my leg and into my lower back (surgeries helped that along, the worst one being when I had a nerve severed in my foot to "get rid of the pain". Yeah right...that worked. NOT! LOL), and then spread again back in 2000/01 to my right hand, wrist and arm. It has never been as problematic in my upper body as it has in my lower, and I have been lucky that it hasn't caused me the problems there that is has others who have upper body, or that had RSD originate in their upper body. LOL..if that made ANY sense at all?

I hope that all goes well with your surgery, and that you will let us know how you are doing? I can't imagine having BOTH arms/shoulders/whatever (??) Be out of commission at the same time? How long are your docs saying your recovery time is supposed to be? Will you have ANY use of your arms? How long will you be out of commission, I guess is what I am asking? Do you have a good Support System at home, to help you through all of this? Geez...I can't even imagine.....

I will be sending you good thoughts and prayers that you come through your surgery with flying colors, and that it all goes just like it is supposed to, that you don't have any RSD problems pop up...and that you are back on your feet (erm...with your arms? LOL) SOON!

Take Care,
Jose