I am scared and seriously concerned. I went to see a very reputable DR who said I needed a double rib resection but he did not take my insurance.

Home now and found another Dr only problem is he does NOT believe that the shoulders have anything to do with TOS. Well this is where most of my spasms and pain are. Of course I have all the other symptoms numbness
weakness of hands and arms which has gotten so bad that I can't let it get any worse.

Other then the shoulder thing I have checked out this DR and he has been given rave reviews


Any suggestions? Surgery has been scheduled after Thanksgiving.
THanks, Neverending

Hi, Sorry to hear your being given mixed messages from dr's - what type of pain do u have in your shoulders....is it shoulder blade or actual shoulder?. I have had a dr try to tell me that shoulder blade pain is not related to TOS when it is.

Does the dr who doesnt think shoulder pain is related to tos also think u shoul have the surgery?

I had to skim your other posts, tough situation with the RSD, but if you are having serious vascular issues and if you find an expert vascular surgeon you should be OK.

There are blocks they can do to help keep the RSD from spreading.
Something to ask the surgeon or anesthesiologist?? about.

The shoulder pain & symptoms might be a product of poor blood flow to the muscles, if not all of the pain at least a part of it.

you know, neverending, you can get a third opinion, or seek alternatives for some relief.

I got into a situation like that, only I had 4 totally different choices to choose from. of course, looking back, what I've done has not worked out great but functionally good with steady improvement.

I have TOS with scalene involvement, bilaterally. I also have cervical and lumbar herniations and bulging discs, plus a few more things to deal with.

MY SEARCH FOR RELIEF:

1) CARDIOTHORACIC SURGEON:
Recommended bilateral 1st rib cervical resection. (At this time no one had diagnosed me with scalene involvement, so this would have been a failed surgery for sure, with a highly probable worse outcome.)

2) NEUROSURGEON:
For his own selfish and powercray reasons, misdiagnosed and misguided me. Not a normal situation I assure you. (later I was told some things by another rude doctor that explained the neurosurgeon's reasons for his intentional misdiagnosis. It all made sense then.) The doctor was Dr. James S. Powell, TriState Christian --("Christian" being the main reason I chose this particular neurosurgeon - BOY, I WAS WRONG TO PUT MY TRUST IN THIS MAN) -- Neurosurgical Associates. Dr. Powell told me I did not exacerbate my preexisting condition (HE WAS SO WRONG-MRIs - WHICH HE HAD -- SHOWED NEW BULGES AND HERNIATIONS AND A WORSENING CONDITION FOR THE PREEXISTING ONES); and said I did NOT have TOS (HE WAS SO WRONG AGAIN).

My TOS and scalene conditions were related to a MVA, but I did have preexisting bulges and herniations that were exacerbated and giving me all kinds of problems in many, many areas of my body. Dr. Powell told me: "Just soft tissue injuries. Work hard on your PT. God bless you." I was sold on him already. "God bless you" just meant it was going to work. After this visit, my physical therapist kept cautioning me about overdoing it for my condition. he-hee-hee.... starting to get more confused now about my condition.

3) PAIN MANAGEMENT DOCTOR:
Great doctor. Very thorough. Diagnosed me with herniated and bulging discs, TOS (no scalene diagnosis), plus other diagnoses. Assured me that rib resection would NOT fix the problem. "Would make the situation worse," he said. Assured me I did have TOS and that Dr. Powell was wrong. (I'm very stubborn. I still followed Dr. Powell's advice--ouch)

This pain management doctor recommended we start with cervical epidurals X3 and brachial plexus injections. I was slated for 12 different types of injections, some in a series of two or three each. (At this time I was afraid of needles.) He also demanded I start taking muscle relaxers. He was so right about that. I had been refusing meds. I put myself through a lot of unnecessary pain because of my attitude with pills. It's not abuse if you need them. I'm still cautious about medication, but I realize you have to use meds sometimes to break the pain cycle. You may need sleep aids to help you get some sleep. I stuck with over-the-counters. not a lot of help, but some help.

Several years later, and with another pain management doctor - just worked out that way, I underwent cervical epidurals X3, just as the first pain management doctor recommended, and I have to say it helped me tremendously, for my neck, back, arms and hands did get relief. WOW.

I haven't underwent brachial plexus injections yet, but if I get into problems with it I will seek those out.

4) MY FAMILY DOCTOR:
He kept telling me I needed to go to the Cleveland Clinic because he didn't do arms and there was some conflict in advice. (Well, that was right after 911 and my husband was working for a company that wouldn't give him time off like that. I couldn't drive to Cleveland so this advice, although good, was a moot point.)

So I struggled and suffered with pain, tingling, numbness, weakness, insomnia, muscle spasms, anxiety and frustration for years. It has been unnerving at times and, no doubt, has taken a toll on my general health overall, down to more cavities because I don't floss or brush like I should.

So here I am, (8 years later) still working, which was most important, with some residual problems. I've accepted that I can't do what I want to do. I'm worn out with doing it just to prove to myself, and anyone else, that I can. That hurts too much. Causes downtime, too. Cost too much money to treat. I just want to be able to do what I need to do, which I am managing to do. I am managing to do a few things now that I want to do.

Pain patterns do change, so don't let pain be the only reason you go for surgery. I have found most doctors do not support the rib resection, citing they see the patients afterwards and most the time with scar tissue and other complications, it's a worse situation to be left with. (This is pain management doctors opinions).

I can tell you that once you're surgically altered that can complicate things, your current condition and any future problems not related to this... so be careful. This probably will not be the only medical condition you will face in life.

I am now with a great TOS doctor (cardiothoracic surgeon - 4 1/2 years after my accident till now, 8 years later) that has helped me along. He would do surgery, but with time and many other things I've tried, I'm doing okay. If I had met this doctor 1st, (Dr. Erdagon Atasoy-Louisville, KY) and with a concurring second opinion, I would have had the surgery in a hearbeat, even if it would've turned out wrong because I was in so much pain and disstress with it. I feel like Dr. Atasoy knows what he was talking about and could have done the correct surgical procedure for me-although horrid. He did diagnose scalene involvement, plus explained things to me that was related to what I was going through. So I know he's the right doctor. And over the years of treating with him, he's proved to be very helpful and knowledgeable. He says he has good results with his surgeries. he probably could have gave me relief and maybe even fixed the problem. Maybe foregone years of suffering here, and probably more suffering to be had in the future. The surgery works for some people. just too late in the game for me to chance a worsening. I am improved, but still have the conditions.

I have bad emotional feelings (even crying spells) thinking back on those pain wrecked years, so you're not alone. I have been there. It does hurt. It is real. I am sorry you are suffering. I hope you are successful in finding relief. however, I don't think quick relief is in your future. Take your time to choose the right thing. if you don't feel right about surgery right now, put it off. If you think that's something you'll benefit from, go for it. Don't have surgery just because it's scheduled. Surgeries can be rescheduled.

I know this is not much help, but it is 8 years of experience with TOS and other things. I hope I didn't confuse you more. I do have some threads with some self-help at home things that gave me relief along the way. try to access those. I need to put it on a thread, or need help doing that.

I hope to hear from you, neverending. Hang in there.

later,
(Broken Wings)

This doesn't have to be a rush situation. We all know how much pain you re in. However, as Jo55 states there are alternatives with RSD complications. Patients have succes with the blocks & as I found out recently Botox has helped.

I have had surgery's but NO rib resection. The complication of CRPS *Fibromayalgia, RSD & Chronic Pain is complicated with surgery. My doc says I am better off not having any more surgery right now. Surgery will enhance the CRPS greatly. I have been going to him for 18 months after an 8 year battle of 35 docs. He is on a consortion with a handful of other national physicians to weed out all the bad information out there on TOS & pain management. So I feel I have been in good hands & relaying good information from my experience.
Cyndy

Thanks to all of you!
You have given me alot to think about...

I guess what scares me the most is the ncs and emg came back so bad and the the DRs were talking about muscle atrophy and and what function I have lost I may never fully recover from if at all and their goal was to stop any more damage from occuring.
I have been going through this for 8 years at least enough is enough!I can't continue to sit here and pick my nose for another 8 years

Neverending

PS does anyone understand?

8 years too, huh.

Well, you deserve a metal. I do understand. Just trying to encourage and help in some way. I am improved a lot from what I was. I don't like to think about those 24/7, off-the-pain-scale years. It will make me cry.

I too have had some atrophy that is noticable on the left side, neck to shoulder. Not a big deal to me right now. It's gone so that don't hurt anymore. I've had a devil of a time with muscle spasms. I've not tried to get it back, either. Probably wouldn't come back much if I tried.

Bad EMG/NCV results is another reason to consider surgery. My EMG/NCVs don't indicate much. I've had three sets. ooouch...

I don't know your situation or history or what area you're from. I know being out in the cold weather can cause my arms to ache. I try to wear leather so the cold won't come through.

Do you have other problems too? Are you in good health otherwise? your age and other risk factors can play a role too, with recovery from surgery. It's just overwhelming, with little help out there.

Are you still scheduled for after thanksgiving?

Don't be afraid to postpone the surgery if you are not fully confidant of the surgeon skills.

But do discuss w/ them about blocks for the RSD, you really do not want any spread of it.

If you do have surgery please let us know how you are doing when you are able to.

I just ran across a woman's video blog on YouTube that has had surgery and its really great because she is articulate and sweet and the surgery was a success!
Check it out: http://www.youtube.com/user/CrazyJ720

p.s. I also invited her to hang out on our TOS forum