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).

Hugs
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~

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.

Hugs
LisaM

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

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~

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.

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.

Hey LisaM, and everyone else I had TOS surgery and a sympathectomy done at the same time I first had test done to see if I was positve for CRPS (RSD) wich I was. I was told everything by this doctor (Same as LisaMs') I was told the risk factors nothing surgar coated for me, this doctor let me know my options at the time since I had not recieved any treatments for so long, for TOS and CRPS no meds no anything I had nothing to lose since I was living in a constant pain scale of 10, my eyes where shut all the time and my head was on shoulder all the time, surgery was my only option. I did not rush into this I talked to a Pain Mng. doc recomended by RSD'rs and a Top Ortho in the country befor deciding this, all where in agreement on me a sympathectomy and TOS surgery was the only option.

I will say this Doctor exsplained everything to me, as well as the other doctors all the negatives and positives wich where few a 20-30% chance it would work is all and even less by other docs, it is too soon to say if RSD has spread since my nerves are going through alot after my TOS decompression and sympathectomy , I will say Doc said I was the worst TOS decompression he has seen , he was amazed how I could even function like he said I was living in just survive mode. I hurt but I haft to see where this takes me now I will let my body heal and go from there I know I may my CRPS come back worse or it may be gone or spread, and my TOS as well.

I think the difference though...is even though we had the same surgeon, he did NOT explain any of this to me, as he did to you. I saw him one week, we scheduled surgery for the next. We did NO TESTS other than a physical exam. All that included was him testing how I raised my arms, and my strength and poking me in a few areas to see when symptoms occurred. He also did NOT explain to me what RSD was, and did NOT explain to me that it could get worse because of the surgery. I brought all of my mri's, emg results, etc...and he didn't even look at anything I brought. Now, I suppose part of this is my fault....but we all know what it's like to FINALLY hear someone say, "Yep...this is what you have, and I can certainly help you,and this is how!" So I jumped at the chance to finally feel better, after a long road of doctors telling me that I was basically nuts.

Maybe he was different with you BECAUSE of what happened with me? Or maybe because you were a WC case? I don't know. All I know is I am SO GLAD, and SO HAPPY that he didnt' treat you the way he treated me...and I so hope that you have a much better outcome than I did. I wish he'd have asked me to have more tests done. I wish he'd have explained to me what RSD was. I wish I'd have had the opportunity to read here on the forum the person who told me not to have the surgery if I had rsd also (but it was too late...I got that message after I'd already had the surgery). i wish a LOT of things. All I know is your experience with this doctor and my experience with him wre totally and completely different. he told me that 75-80% of my symptoms would be resolved with surgery. So, perhaps I had Dr. Jekyll and you had Mr. Hyde LOL!

ok guys showing my ignorance.......what test for CRPS or rsd...been told I have crps 1....which is now supposidly all lumped into crps no deliniation as to which type so the whole of the medical community worldwide can get the wording correct and know what the heck each other is talking about.......


anyhoooo....want to know the test I had the nerve blocks after 6mths of no pain post op and was almost fully functional until physio killed me and put me back to where I was pre op........damn it all to heck......but anyhow again.......I am stll in pain and want to know what type of blocks you guys have or wish to have had.....I have had trigger point bupivicaine (anesthetic sp??) and not sure it helped at all and if it did it only helped in a few spots....think I want marcaine....I know it lasts longer we used to give it to our post op below or above knee amputation oncology patients right into the nerve......they had no pain at ALL and could move until we took the pump out but it lasted for another day at least!!!! so....agian info would be nice guys>????

thanks
LOst....oh I mean Victoria.
hugs