It's just me everyone,

If anyone thinks they could have RSD it's vital you have it ruled out. I was DX with RSD before TOS. If you have to have TOS surgery the MD's can do things to make sure you do not have a RSD spread.

While going over my OR report. Filler MD took every precaution possiable. Like Marcaine was applied extensively to help suppress any RSD from the GANGLIA. Their was also alot of precautions for the nurses written in 8 x 10 paper to not even take blood pressure in a certain arm etc... But Filler MD saved my right limb, I am very greatful to him.

Surgery wasn't a choice for me. I sought 3 opinions they all said surgery. I beg of each and everyone of you if you have to have surgery make sure you do not have RSD. The Docs can do things to make the nightmare not spread.

I have never had a spread. which I am so thankful for. I Love You All, Roz

Hi Roz,

How do they diagnose RSD?

Thanks,

Cala

Thanks for the warning, Roz...

Here's a link to the article I was looking for on diagnostic criteria...if you skip to pages 9-11 there are some good tables with specifics on diagnosis. It's a fairly new article, dated June 2006, and I thought it was pretty comprehensive.



http://www.rsds.org/3/clinical_guide...diagnostic.pdf

Hi Donna,

I really want to address the pages 9-11. Or maybe it means 911.

But on a serious note, maybe the Docs read something like that article and didn't DX me correctly. RSD does not have to come on like gang busters. The SX on pages 9 were addressing mostly Stage 2 and 3 of the nightmare. Where you have the full on SX in other words.

It's vital for remmision you get DX at stage 1. I had several MD's tell me they were so sorry that they just didn't see it. Filler MD was not one of them. I saw him around the 3 3/4 mark.

Beth where are you?

Hugs, Roz

Great article!! And that's a good point Roz, thanks for bringing that up.

I read one of your threads awhile back that was asking about how to tell the difference between TOS and RSD and I am still confused about that.

I have been told I have RSD like symptoms, and encouraged not to have any unnecessary surgeries as it might cause RSD to spread, but no one has said anything about how to treat me if it really is RSD.

I have been bouncing back an forth between this forum and the RSD one trying to get an idea of how and where I should try to proceed with treatment since the doctors aren't suggesting anything.

Cala

Hello Cala,

The MD that suggested RSD should of referred you for a SGB block.

Get to a very competent Pain mgt. Doc.

We can have both TOS/RSD I DO.

Hugs, Roz

You are absolutely, positively 100% correct in this! And this is my issue, 1000% with the surgeon who did my TOS surgery! Why I am so angry with him!

Prior to my surgery, at the consult, he said to me "You have a bit of RSD also, but it seems that is your secondary issue. If, after the surgery, the RSD doesn't clear up, we will do a sympathectomy when we do the surgery on the left side."

***NOTE: My TOS is bilateral - and I was going to have my RIGHT side done FIRST, my left side done about 8 months later.***

I had, at that point, been to about 15 doctors/specialists for my TOS, attempting to find someone who would help me. I'd been to about 3 rounds of PT, and nothing was helping. I was at my wits end. This surgeon was out of my state, but the teaching hospital here recommended him. So, trusting them, I went to him. Andhe's the only one who BELIEVED ME. Well, I did have my MD believing me, but unfortunately he didnt do the surgeries, and didnt' know how to treat it, and he didn't know of anyone who was familiar with treating it (*and the dr's list we had on the site, I did contact the doctors on it local to me, and none of them in reality DID treat TOS, so the list was incorrect). Therefore, this surgeon was my only choice. And I was SO HAPPY that he said he could fix me!

I had researched TOS extensively by then. Had never heard of RSD, but had scheduled my surgery for about 2 weeks later, cuz I'd be on Christmas break from work, giving me at least SOME of my time off paid, to recouperate. So I didn't have a chance to check into RSD. Additionally, I trusted this surgeon, figuring since the teaching hospital here recommended him, he must know what he's talking about. And he also touted himself up so much, claiming to be one of the top surgeons in the country for TOS, that I thought I was in good hands...so I went thru with the TOS surgery on my right side.

When I was back home, in my own state, and began my physical therapy, I had some concerns. Not only was my surgical side experiencing EXTREME tenderness and sensitivity, but so was my NON surgical side. I had experienced the numbness and tingling, from the TOS, but now, that tingling on top of the sensitivity made things even WORSE! I mean, I was in even MORE pain on my non-surgical side cuz that tingling on the sensitivity was like I had ants crawling on me, and just GNAWING on me with sharp little teeth all the time. And the skin on my surgical side hand was peeling off like crazy. My PT looked at me and said, "Lisa, you have RSD..." and sent me to see the doctor at PT. He confirmed it and wanted me to start a series of blocks. He contacted my surgeon, who stated NOT to do the blocks. It was "too soon after surgery" and he didn't want that area agitated. He said to wait about 8 months, until that side was healed completely.

So...I went about my PT, and they also started the desensitation and the OT for the RSD. I was in PT 4 days a week, 2 hours each day - an hour of PT (for the TOS), and an hour of OT (for the RSD). I worked HARD. I returned to the surgeon for my 60 day post surgical checkup, and inquired about the RSD, stating my concerns...and he told me I wasn't giving myself a chance to heal...that I was "expecting too much too soon." To give it time. He was TOTALLY IGNORING the fact that my RSD had not only gotten worse, but HAD SPREAD. I was NOT in this much RSD pain prior to the surgery.

Once back home, and after giving it more time, I emailed his office. Now...prior to the consult, he would respond to my emails right away. He was destined to help me, and very, very helpful. Even after my surgery, and before my post-op follow up appointment. But after that appointment, and when my emails started asking him why my RSD spread, and if he'd taken precautions during the surgery (cuz by then, I had read that he should have, or not done the surgery at all), he stopped responding to me...PERIOD. To this day, he won't respond.

Now I look back at what he told me during my consult: "You have a bit of RSD also, but it seems that is your secondary issue. If, after the surgery, the RSD doesn't clear up, we will do a sympathectomy when we do the surgery on the left side."

Any of you with RSD and who have done any research KNOW that a sympathectomy is A LAST RESORT. A sympathectomy takes away MANY means of pain control (such as SCS and I believe pumps). Cutting that nerve means that implanting things into that nerve is now impossible. So numbing that nerve is now impossible. Not only that, but it makes your RSD sympathetically independent....meaning it's no longer JUST reliant upon that nerve. I realized at this point that the surgeon was just "knife happy" and performed these surgeries for the money. He did not, IMO, have my best interest at heart.

After that surgery, I was emailing with someone on these boards who saw that same surgeon, and who was having the same issues I was having. But then the board crashed, and I lost touch with her. I wish I knew who that was, because I'd love to see what issues she is STILL having. I am now 1 year and 2 months post op...and my issues are WORSE than they were then. And I see them getting even worse as the years go on.

And the worst thing about it is...there is nothing I can do to that surgeon. I can't sue him. I can't do anything. It's ridiculous. He wanted to JUMP to do any surgery I'd have allowed him to do....and that's not right.

So anyone out here who has both dx's...PLEASE heed the warnings you read in this thread. IT'S ALL TRUE! There is a HUGE risk when you have TOS surgery. MANY people have the dual dx of TOS/RSD. The RSD may be "hiding behind" the TOS but it could be there. The biggest and most noticable symptom is the sensitivity. They knew I had it cuz of the fact that any stir in the air bothered me - like the air from a ceiling fan. NOW...even the slightest change in temperature - like of only ONE DEGREE is bothersome and PAINFUL to me. I haven't been able to wear a bra since the surgery, cuz my RSD has spread to my shoulder/chest area, so the straps hurt.

Please...do think about this when/if you decide on surgery.

TOS is such a weird and personal condition.

Actually, I have really bad RSD PRIOR to surgery. I had severe burning and nerve pain that would travel - it was then at the back of my calves and buttocks as I'd try to sleep. It usually became most intolerable around midnight.

BUT AFTER surgery, surprisingly, as my general ciculation improved, the RSD burning disappeared. However, I still have severe sweating where I wet my entire bed -moving around to dry spots - and have to sometimes change 4 times per night from just soaking PJs. Also temp changes, loss of hair, etc.

But it is so strange, about the burning pain leaving. THe HOT, hot skin left.

Dr. Annest did my surgery with no special RSD stuff.

The other weird thing, is that my docs in CA ignored my RSD until I got to a very good doc after 18 docs or so...now the docs from UCLA saw RSD as a second diagnosis, with fibromylagia being three.

But RSD is something to consider along with the surgery risks in general. I know I was scared to death. But the surgery was a SNAP, (except afterwards the nurses screwed up my pain med prescription) but the surgery itself, compared to wisdom teeth, cesaerian, two births, was nothin' to me.

But still, I'm not advocating not seriously considering the above posts!

I had right surgery so far, with rib and most scalene muscle gone.

Bumping up

If you are going to have TOS surgery but do not have RSD, what should you ask? Seems like alot of TOS people get this after surgery and it scares the heck out of me.