Scary decision about TOS surgery and sympathectomy!!

[Guest guest]

Hi all, I need some input, in the end I have to listen to all the advice and my Drs and make the best decision for me, but want to hear from you too.

I am dx'd with Thoracic outlet syndrome and CRPS-2, as you know, due to nerve damage from an adverse reaction to a tetanus shot last February. The muscles in the shoulder girdle were weakened and my shoulder droops abt 2 inches, so all the nerves are being pinched between the collarbone and the first rib. I have pn 24/7 from the neck to the fingertips, upper back, under arm, below collarbone, along ribs, headaches, jaw and ear. The CRPS is maily in rt forearm and hand, deep bonecold frostbite ache, hand goes ice cold 15 times a day, senitivity to texture, drafts or a/c, atrophy of the ulnar-innervated muscles in the hand. I did have a lot of sweating early on in the hand but not so much now. No real color changes, mild swelling, no pitting or ulcerations.

Anyway, it's been 11 months, I've tried PT/OT, even the day treatment program at the pain clinic, and nothing has relieved the nerve compression, weakness, pain or atrophy. My Drs agree it is time to talk to the top TOS surgeons abt the TOS nerve decompression surgery, i.e., removal of the first rib to alllow the nerves room to move freely again. It is a major operation and not without risk, but the Drs in Denver are the best in the country for it. My big fear is how the CRPS will respond, I know surgery can cause it to flare or spread. My Drs feel the nerve injury continues to drive the CRPS, and if the nerves are released, the CRPS COULD go away or at least subside considerably, but there is no guarantee. I spoke with both surgeons receptionists last week and asked them to have the surgeons respond as to how they wd deal with CRPS during TOS surgery. One called early this week, he said he wd likely do the surgery under a block(he was encouraged that I did respond to SGB, they just didn't last long, he said with TOS present, it is like applying a local anesthetic to a finger with a splinter, when it wears off the pain from the splinter is still there), then after the surgery do a series of blocks, if that wasn't effective then I think he said he wd recommend an SCS or morphine pump, he was not keen on sympathectomies, at least not until last resort. The other surgeon, said to be THE best, called last night, he said if we went in to do the TOS surgery he wd do the sympathectomy at the same time, because going in WOULD flare the CRPS up, and it would not be hard to do the sympathectomy from the location they wd be going in to do the rib removal anyway - I think they go in at 3rd rib, under arm, and tunnel up.

I see my PCP next week, and want to talk to my TOS Dr in PA about this, he used to do the TOS surgery with sympathectomy, and is close colleague of Dr Schwartzman also. I think Dr Schwartzman is no longer doing sympathectomies, so want to get my TOS Dr's current thinking on it.

Will go out for consults and get more info ASAP, then come home to think it over and arrange childcare before scheduling surgery, so much to think about, such BIG decisions to make, really don't want to screw this up!!

beth

[Guest guest]

Beth,

From everything I've ever heard, very, very few doctors will do a sympathectomy because once the nerves grow back together, the RSD comes back 100x's worse.

That is just what I've heard from some that has actually had them done themselves....

If it was me? I'd go to the one that wants to do the blocks......especially where you've had some sucess with them.

Tonia

-------Original Message-------

One called early this week, he said he wd likely do the surgery under a block(he was encouraged that I did respond to SGB, they just didn't last long, he said with TOS present, it is like applying a local anesthetic to a finger with a splinter, when it wears off the pain from the splinter is still there), then after the surgery do a series of blocks, if that wasn't effective then I think he said he wd recommend an SCS or morphine pump, he was not keen on sympathectomies, at least not until last resort. The other surgeon, said to be THE best, called last night, he said if we went in to do the TOS surgery he wd do the sympathectomy at the same time, because going in WOULD flare the CRPS up, and it would not be hard to do the sympathectomy from the location they wd be going in to do the rib removal anyway - I think they go in at 3rd rib, under arm, and tunnel up.

I see my PCP next week, and want to talk to my TOS Dr in PA about this, he used to do the TOS surgery with sympathectomy, and is close colleague of Dr Schwartzman also. I think Dr Schwartzman is no longer doing sympathectomies, so want to get my TOS Dr's current thinking on it.

Will go out for consults and get more info ASAP, then come home to think it over and arrange childcare before scheduling surgery, so much to think about, such BIG decisions to make, really don't want to screw this up!!

beth

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[Guest guest]

A tough decision....if it were mine to make (and it is obviously not ), i'd vote for blocks before, during and after the TOS surgery followed by a SCS implant if need be. Very few docs (nor the research) support the idea of a sympathectomy anymore. There's too little evidence that it helps and frequently, in fact, can later result in a return and increase in symptoms. Sorry you're having to dealth with all of this. BarbaraBeth wrote:

Hi all, I need some input, in the end I have to listen to all the advice and my Drs and make the best decision for me,

[Guest guest]

Beth,

Have you followed the B-vitamin, Niacin thread on the list. You may wish

to try this before you go in for surgery. The niacin at the very least

should improve your blood circulation to all parts of the body, and

should help the bone chilling cold you talk about.

You can write to me or Deb seperately if you wish to know more

Rajiv

Beth wrote:

> Hi all, I need some input, in the end I have to listen to all the advice

> and my Drs and make the best decision for me, but want to hear from you too.

>

[Guest guest]

Rajiv,

I am taking multi B-complex, but the surgery is a must due to the severity

of the nerve compression, I am losing function in the right hand and have

progressive atrophy of the ulnar-innervated muscles in the hand due to the

compression at the brachial plexus and at the cubital tunnel. Intensive

therapy specifically for TOS has not helped relieve this, and it is best to

have the surgery while the CRPS will still respond to blocks, if I wait

until the CRPS pain is sympathetically independant then I will not be a

candidate for the TOS surgery, and I will lose function of my right hand. I

can't let that happen, I'm 42 years old, have 2 young kids to drive about

and take care of and a lot of living to do, and I am right-handed, I have to

try to save the function of my hand.

It's not an easy situation, that's for sure.

beth

[Guest guest]

Beth,

They did in me a sympathectomy does already 10 years, and when it returned, two years ago, it was very worse... Studies that prove that the sympathectomy is not fast exist. I am using the morphine bomb and I am having an excellent result. Think on this.

Re: Scary decision about TOS surgery and sympathectomy!!

Beth,

From everything I've ever heard, very, very few doctors will do a sympathectomy because once the nerves grow back together, the RSD comes back 100x's worse.

That is just what I've heard from some that has actually had them done themselves....

If it was me? I'd go to the one that wants to do the blocks......especially where you've had some sucess with them.

Tonia

-------Original Message-------

One called early this week, he said he wd likely do the surgery under a block(he was encouraged that I did respond to SGB, they just didn't last long, he said with TOS present, it is like applying a local anesthetic to a finger with a splinter, when it wears off the pain from the splinter is still there), then after the surgery do a series of blocks, if that wasn't effective then I think he said he wd recommend an SCS or morphine pump, he was not keen on sympathectomies, at least not until last resort. The other surgeon, said to be THE best, called last night, he said if we went in to do the TOS surgery he wd do the sympathectomy at the same time, because going in WOULD flare the CRPS up, and it would not be hard to do the sympathectomy from the location they wd be going in to do the rib removal anyway - I think they go in at 3rd rib, under arm, and tunnel up.

I see my PCP next week, and want to talk to my TOS Dr in PA about this, he used to do the TOS surgery with sympathectomy, and is close colleague of Dr Schwartzman also. I think Dr Schwartzman is no longer doing sympathectomies, so want to get my TOS Dr's current thinking on it.

Will go out for consults and get more info ASAP, then come home to think it over and arrange childcare before scheduling surgery, so much to think about, such BIG decisions to make, really don't want to screw this up!!

beth

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