Hi All,

I have several surgeries that I should have to relieve other problems that have developed over the last 4 years ( since TOS) and am considering a breast reduction as well, but was told by my surgeon tht I don't want to have anything unnecessary due to possibly acquiring RSD from the surgery.

That terrified me. I have read little about RSD... too afraid to go there. So I am asking you instead. I know some of you suffer with both TOS and RSD, and I would prefer to get my information from someone who has developed RSD from surgery, rather than reading through informationon web sites.

Thank you!
G~

I think I understand your question correctly.
I know of several people who have RSD and have surgery or who have TOS and have surgery & don't want to get RSD.

In each instance, the answer was to have a preventative block * a SGB -

I know you want answers from people so I told you what they have told me.
If you DO want to read on it here are some good sites. Otherwise just ignore them. Or maybe they'll help someone else??

Here is a site that may be somewhat helpful, because it is exactly what those people told me.....one even had a big spinal surgery and RSD did not spread to that area.
http://www.rsds.org/5/news/2005/reuben.htm

There are so many more & so much is written on this subject.
Hope this helps some even though I have not personally had the experience.

Hon, do you have RSD already...or are you just worried about getting it because you've already had TOS surgery, and you are under the impression that once you hav TOS surgery, RSD is a strong likelihood?

It's been my understanding that if you were going to get RSD, you would have gotten it at the time you had the TOS surgery. If you have NO SYMPTOMS of rsd at this time, chances are there is no way to determine whether or not you are susceptible to it. There is no way to determine who is or is not susceptible to rsd. That's why so many ppl get it after surgery. However, in my PERSONAL case, I had symptoms prior to surgery, but my surgeon took NO PRECAUTIONS, just went on "business as usual" and performed the tos surgery...which made me WORSE and also caused spread. I have bilateral tos...had the right side tos surgery...have NOT had the left side done, and cant have it done, cuz of the rsd. Well, probably could with precautions, but I'm too afraid to.

I wold "assume" your surgeons think you are susceptible to rsd. If you let your surgeons and anestheologist know you are susceptible to it, they can give you BLOCKS prior to any surgeries to prevent the rsd fro occuring/spreading. Tht will numb the nerves, so it's not "kicked up a notch" and can't get "stuck" in that "hyper" position."

Hugs
LisaM

Thanks Hope, for the site ( I bookmarked it ) and LisaM for your personal experience !! Those were the answers I was looking for! It is so hard to sit down and read through anything thse days, can't read that long, flares the TOS ,
so this is exactly what I was looking for!!

Thank you, Thank you, Thank you !!!!

And anyone else that would like to share, I am all ears !!!

G~

I don't have RSD, at least not that I has been diagnosed; though the Surgeon who did my decompression surgery mentioned it as a possiblility in my 6 mos. post op. report when writing about the coldness in my hands and toes that I still experience.

Also, lately I have had a searing, burning pain in the pad of my foot behind the second toe that I would like to have checked out but I don't know who to see! I am having an MRI today of my lumbar spine as I have had severe back pain lately and the good old sciatica that can go along with it. I don't know if the foot is asociated with that or if it is a different issue.

I swear, if it isn't one thing it's another!!!

G~

G~
hope the MRI goes well for you and some good answers are found - meaning no bad stuff show up - I suppose you have to wait a week or so to get the results.
J

Gromlily,

I had RSD before my TOS surgery, but it flared horribly afterwards. I really didn't understand much about RSD at the time, had been so "focused" on what to do about the TOS. Knowing what I do now, I still would have had surgery cause I needed it, but I would make sure things were explained more clearly to me about my RSD and that all possible precautions were taken to prevent or minimize a flare or spread.

I did have a block, an SGB I believe, less than 24 hours before surgery. That may be enough if you don't have RSD, but it wasn't in my case. I've since heard from many people with RSD who get continuous blocks before, during and after any surgery, through IV, to keep those nerves saturated and quiet for as long as possible. If I ever have to have the rib resection on the left, it will have to be done that way.

A PM/anesthesiologist is usually the best one to ask about blocks and what options you have for surgery and /or post-op, if any.

Oh, I did have a pump taking Lidocaine to the surgical site post-op, but stepped on the tubing and pulled it out the day after surgery - my nurse couldn't be bothered to untangle and wrap up all my cords and wires

Hope you get some good answers soon.

beth

G, The person who dx'd my RSD was actually my PT. After that, it was confirmed by my surgeon, and then by my pain doc. From what I understand, RSD doesn't really only occur in a SMALL area, but generally occurs in a limb, or rather it would be your ENTIRE foot, ENTIRE hand, ENTIRE arm, etc. I wouldn't think it would be just the PAD of your foot. But...RSD is a strange monster, and it could be that it's a "start." I'm not entirely sure, and please dont take my word on that. Mine is comprised of both of my hands, my entire right forearm (underside), up to the right shoulder and includes the area where the tos surgery was (clavicular) thru the neck and chest, across to where the hollow of my throat is. I keep an eye on that "hollow" of my throat, and know PRECISELY the point where it stops...because I think it is actually "creeping" over to the left shoulder/chest area. So my left side is only my left hand. At least, for now.

MANY ppl have had surgeries and had a good anestheologist and had blocks done prior to the surgeries and had success. Even had BABIES. And the RSD hasn't spread. The "key," I think, is getting an anestheologist who also works as a pain doctor who is VERY KNOWLEDGABLE in the treatment of RSD. For instance, I wouldl be COMPLETELY comfortable with my pain doc being my anestheologist if I were to have surgery. In fact, they would probably be the ONLY ones I would trust. So if you absolutely MUST have a surgery, that's what I would consider. Whether or not the A is also a pain doctor, with experience treating RSD (and how successful he/she has been with his/her patients, and for how long he/she has treated rsd patients).

That's the advice *I* would give in yoru situation. As for the coldness in your hands post op....what you want to look for most of all is PAIN in yoru hands. It's a very deep BURNING pain. Almost like a sunburn, but more INTENSE. Right now, I am having more and more difficulty MOVING my hands. The pain I am currently havng on top of the burning is almost like an arthritic feeling in the joints. Now, I don't know what arthritis feels like cuz I've never had it, but ti's what I'd IMAGINE it would feel like. Also, when I flatten my hand, I feel a HORRIBLE pain, like a PULLING, in the center of my hand and in the fatty part up top where the fingers start. I believe that is my tendons shortening, which is what they said could happen. In spite of the exercises I do every day,several times a day, I think it is still happening.

So EXERCISE THOSE HANDS. Keep them moving. Look up on the internet "tendon glides" for hands and do them faithfully if your surgeon thinks this may be an issue. The WORST thing that can happen is for your hands to freeze up and for those tendons to shorten, and to get a "claw hand" because of it. It's very hard to reverse that damage, and to lengthen those tendons once they shorten. And whenever you are sitting, either sit on your hands so they are flat, or be sure to keep them flat on your leg. Don't sit with them relaxed into a semi cuffed position. This is just a precaution for you, "just in case."

Hope this was a little help hon.

Hugs
LisaM

Lots of good information from all !! Thanks so much !

LisaM, I am so sorry to hear about the extent of your Pain!! I had no idea you suffered that much!!! Somehow I missed the boat on that one !!

I must admit I don't do the nerve glides as much as I should and am finding it difficult and uncomfortable to have my hands flat, so thanks for the reminder!

Thanks also for the description of your RSD, and the anesthesia/anetheseologist required !! That helps alot !!

And you too Beth, thank you for your information. That is very helpful as well. So sorry about the tube coming out post op. That had to hurt!! And then no pain relief in that area...Geez!!

Thanks for your good wishes Jo55, and yes it will be at least a week if not longer!! Hopefully all will be fine !

You Guys are awesome!! I truly appreciate your advice/suggestions !!
G!

~G, I being a male probably have no right in putting my 2 cents in on this topic ! I think one has to look at the lesser of evils and long term results... It is also my personal beleif that where TOS is involved RSD and Fibromyalgia are just sitting on the sidelines waiting to rear their nasty heads. Whatever you do my thoughts go with you and my prayers for a favorable outcome

as always
Mark-n-Goober