Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 11-08-2006, 10:20 AM #1
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Default RSD After TOS surgery - yes again....

I think I asked this on the old forum, but doesn't hurt to ask it here....

Those of us who ended up with rsd after the tos surgery...and ESPECIALLY those of us who were told PRIOR to the surgery that we had a pre-existing rsd condition, yet weren't given blocks to prevent the rsd from spreading...can the surgeons be held responsible for the spread, do you think?

Additionally, is there a chance we all had the same surgeon? Cuz i do know of at least one or two ppl who had the same surgeon I did and ended up worse...and he's on the Drs list, but I didn't think I was "allowed" to tell I don't recommend him (publicly that is).

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Old 11-08-2006, 02:06 PM #2
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Thumbs up Great Question LisaM !!!

...and I do feel that telling others whether by P.M. or other means is exactally what this forum is for !!

As patients, we do need to help each other in wht ever way we can. The Dr.'s (see my thread to SAW on the other forum) as we all well know, stick together. We need to be able to do the same!

Excellent question!!

G~
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Old 11-08-2006, 03:11 PM #3
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Quote:
Originally Posted by Gromlily View Post
The Dr.'s (see my thread to SAW on the other forum) as we all well know, stick together. We need to be able to do the same!

Excellent question!!

G~
Ah...I just looked at it. Okay...to expand on the "dr's stick together" issue...yes, I have found they do. Do you know how many times I have asked the question of different surgeons, "Should my surgeon have done blocks proir to the TOS surgery if he knew I had rsd, in order to prevent the spread or exacerbation of the rsd?" only to get the answer, "Well, um, er, well...it's really a, um...a kind of personal preference really...it's not MANDATORY, by any means, but it's what *I* would have done...personally that is."

NOBODY and I mean NOBODY will ever come out and say, "ABSOLUTELY he should have! That's common knowledge! I'd be willing to testify to that 1000%!" and until I hear that, more than likely I won't be able to sue him...which means he can never be held responsible for this.

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Old 11-08-2006, 03:35 PM #4
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Default Lisa

I mention Dr. Sanders on here when ever I talk about my surgery. He's my pick just like others have theirs. That's ok though, we all find Drs. that we either trust or we don't. There are also times when we trust a Dr. and then find it was misplaced.

You should be able to mention your Dr. on here. I think we have talked about the good or bad of some of them anyway but again we don't have to turn them into arguments.

Drs. do stick together. We see that so much. I have one Dr. though that says he doesn't trust Drs. and he has argued with some and even told one that he didn't like the way he did surgery. So there are some out there that disagree but 99% do stick together.

It's ironic I think that I went to the Vascular Institute for my surgery and he sent me to Dr. Sanders to do my surgery and even called him buy his first name. I think they are all tied together in a lot of ways and they really don't care which one we go to for surgery. They aren't competitive that's for sure.


A lot of Drs. also tend to not say a lot of things. I think they are taught in school the old saying " The less said the better". It saves their buts when things go wrong.

A lot of people were made worse by surgeries and I think it's from not telling a patient everything up front. It's great that we have this website because we can learn from each other and hopefully head of any mistake that a Dr. might make in the future by what we know.

I'm kind of wondering if a block shouldn't be done before any TOS surgery. It seems to be one of the biggest things that brings it out. I do ask my Drs. for blocks and I have ran up on several that won't touch me because of the RSD but I do believe that there are times when you have no choice but to have a surgery and some have the common sense to know that and will ward off any more pain then we already have

I hope you do start having some better days.
Ada
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Old 11-10-2006, 12:39 PM #5
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Default Ada and Lisa..

In my experience , and the key words here being my experience, (..mine, just mine...) it works both ways regarding the DR.s.

Some of them do work together because they realize it can be for the good of the patient to consistently work together. The have an opportunity to learn each others philosophies and techniques. I used to work in Oral surgery for a while where the Oral surgeon was doing reconstrution cases. We would go to lunch with the General Dentist, the Periodontist, and if possible the Primary Dr. or Oncologist and the prosthedontist to discuss the case and come up with a treatment plan (one of the joys of living in a smaller town).

I have also worked for specialty practices as well as General Dentists that have been extremely competetive; so much so that they have felt compelled to dig into their main competitors trash to compare fees charged, and/or compare the size of their ad in the phone book to others.

It is a shame that discussions do turn into arguments at times. I will add that I did not intend for things to take the twist that they did. I had e-mailed the now anonymous person many times, p.m.'d him, spoken with him on the phone. P.m'd him again and received excuse after excuse until I lost my patience and posted the now infamous and at the same time, nonexistent post. The bold print and "mad" faces I used were supposed to convey frustration, not to elicit the response it did. In hindsight. I see I should have known better than to post that way over there. There doesn't seem to be any room for disagreement with out it turning into an all out war. It's the same few, always has been, hopefully won't always be. I'll never know. I'm not going back.

When I came onto the B.T. forum almost 5 years ago, I began threads with questions of "Have you heard about DR. So and So. Some responses were posted. Others were P.M.'d.

I suppose that it would best to keep negative information you might have to share about your personal experience with a Dr. private, but then what's accomplished? Are we really here to protect and preserve Dr.'s reputations, or other TOS sufferers from negative outcomes ?? Isn't the purpose to educate others about our experiences?? Or is it only the good ones we share??

G~

Last edited by Gromlily; 11-10-2006 at 12:50 PM. Reason: typos **
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Old 11-10-2006, 02:01 PM #6
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The surgeon who did my surgery was in one state. I spoke on the phone with TWO of the Denver surgeons who are recommended here, and BOTH of them told me that they believed this surgeon was wrong in what he did to me. That if THEY had done my surgery, they would have done blocks prior to the surgery. They also would have gone in thru my armpit rather than thru my clavicle. Now, I understand that the location they go in thru is a personal choice...and that's not my issue. My issue is that the surgeon TOLD ME prior to surgery that I had RSD. I had no idea that I did. ONE WEEK LATER I was scheduled for surgery. I think I posted here what he had said, and someone tried to tell me not to have the surgery if I had RSD...but by then, I was already there and under the knife...so it was too late.

One of the Denver docs also informed me he had done "several redo's" of patients who had already had surgeries by the same surgeon I had. Yet when I asked that Denver doc if he would testify to that, he hemmed and hawed around and said basically it was a "personal preference" on whether or not the blocks were done prior to surgery.

Yet when I read ANYTHING on the web having to do with surgeries on someone who has rsd, it appears to be COMMON KNOWLEDGE that this is the approach taken. I don't think my surgeon was particularly worried about it because he planned on doing my left side also, about 6 months later, and figured he would also do a sympathectomy at that time "if the issue didn't resolve after the right side surgery was done." Which, now, I know what a STUPID remark. Cuz surgery doesn't make rsd BETTER...it makes it WORSE...so that comment he made was all horsehockey! He just wanted to get more money, in my "assumption," for the sympathectomy he planned to do when I came back for the surgery on my left side for the TOS there.

Yet, insted, my RSD spread...so now I STILL have TOS on my left side....and in addition, have RSD in more places than I did before...so I'm in even worse shape...and can't do anything to hold him responsible cuz no other surgeons are willing to state that what he did was NOT generally practiced.

This just doesn't seem right.

I CAN, however, see how the periodontists and dentists, etc will all work together as a team for a patients common good. But when it comes to a situation such as that whcih I'm talking about...where the two Denver docs openly admitted to me that the surgeon I went to did me wrong...that they've redone some of his surgeries in the past and don't agree his methods are right, yet he continues to practice that way, and that he really did perform in a manner which is KNOWN to do more harm than good...yet they won't testify for me...that just doesn't sit well. That's "covering for" someone in their own field...and equal of theirs. Even though they KNOW that surgeon has done other patients BESIDES JUST ME wrong in the past. But, they do his "re-do's" so maybe it's a money thing for them, too. Who knows.
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Visit My Message Board - Helping Custodial Parents Collect Child Support From Deadbeats for 7 Years
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right Side TOS Decompression Surgery 12/2005
RSD Exacerbated after surgery
Still have TOS on left side
RSD On right side, currently in hand, forearm (underside), shoulder, chest, to hollow of throat, and in left hand creeping up into left wrist
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Old 11-10-2006, 02:15 PM #7
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I think a simple statement of "This was my outcome" or " this happened in my case" ect , should be fine.

Especially if you think there was a blatant disregard or mistake made - I would definitely make a short note about it and post "for more info PM me" - in the Dr list sticky.

Something like that??

I am sure all drs & surgeries can have good & not so good outcomes - especially with TOS.

I can't help to feel that if any underlying posture -or any other- issues aren't addressed long term -symptoms may return.
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Old 11-10-2006, 03:20 PM #8
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Default Yes,

I see your point and I agree.

My understanding is if you are working with an HMO here in CA,and haven't had the outcome you expected, the patient can file a complaint with the Department of Managed Healthcare ( I don't know if this applies to all situations, or states).

My husband filed a complaint after being denied a procedure he wanted at our HMO. He was concerned because he had filed a complaint against the Surgeon who was to do his his cancer surgery as he wanted a different type of treatment. They ruled that the procedure the Surgeon had reccomended doing was fine and an acceptable treatment. Rather than allow the cancer to continue to grow, he went ahead and had the procedure done. His worst fears were realized and he had major radiation damage from the procedure.

My husband's second case is now being filed with the board, and in this one he is filing charges against his HMO for his radiation burns. We were told we had to go this route first before we could pursue legal charges. You go before a Independant Medical review board and present your evidence or have an authorized representative present it; it doesn't cost you anything to file or appear before the board.

Maybe others can tell you if they have taken that route and had a good outcome.

This is supposed to be a way to have the Surgeon disciplined, or his liscense revoked with out having to involve another Surgeon who may be unwilling to voluntarily participate.

I hope that maybe this time I have better understood your question and been able to help some,

G~

Last edited by Gromlily; 11-10-2006 at 05:02 PM. Reason: cleaning up a confusing sentence...
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Old 11-10-2006, 03:25 PM #9
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Default Lisa,

Jo is right sometimes surgeries done by the no. 1 Dr. in the US can turn out wrong but it was very wrong for that Dr. not to address your RSD. As for a sympethomy. I have heard that even with them the RSD can come back and be worse.

My surgery was done at the neck area and let me tell you I am so happy with where I'm at with my surgery. I fell again and messed myself up but I am still not as bad as I was before the surgery. I felt like I was 75% better after my TOS surgery.

I think on the old forum we did try to discuss Drs. but it got so out of hand it finally had to be stopped completely. It could not be discussed rationally. Some Drs. are put up on a pedestal and as I said before our trust can be displaced. I have only found that with one or two Drs. I have some great Drs. on my team now but believe me I went to at least 75 before I got the ones that stepped up to the plate and did my surgeries and followed through with good care and stuck by me.

I hate it when a Dr. does a procedure and just throws you out in the cold and leaves you as you are. They are not going to admit their mistakes though. I have only had one Dr. tell me he was sorry for the way he handled a problem. That is very rare.

They very seldom testify against each other and unfortunetely it has been made harder to sue Drs. by laws that have been past in the past 6 years. I have talked to several lawyers and they said that it is very hard for them anymore to sue a Dr. or a pharmaceutical company.

I think though in a way it's sad that we can't tell our stories on here to keep other people from going to the wrong Drs. Here in our little town Drs. have reputations that precede them. People here have a story to tell on a certain Dr. and they do. After you hear so many people tell horror stories about one Dr. then you know not to go to that one. We even have a hospital here that has such a bad reputation that people tend to go out of town. I feel like people have a right to know the truth and then make their decision.

I am an advocate for trying to get the truth out around here about certain Drs. I listen to peoples stories and I have my own story to tell and I use it to try and make other people aware.

I realize here we most likely can't do it peacefully so I know what jo is saying. Maybe people can PM you for the facts and name of the Dr.

Ada
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Old 11-10-2006, 05:01 PM #10
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Default Ditto...

I agree with Ada and Jo both.

I do what Ada does as well, when asked my view or experience in the town that I live in.

And in the future, I will do as Jo has suggested and post a stickie.

((Hugs back Lisa))
G~
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