And now the doc office just called back and said they received a very detailed letter from the shoulder surgeon and the surgery might be back off. Now we have to wait until Monday to find out if the doc is going to do the surgery. I hate this roller coaster.

OMG what a terrible roller coaster ride they have you on. I am so sorry. My case is similar although not exactly the same. I was diagnosed with a herniated disc at C4/C5 and told I needed surgery by a neurosurgeon. At the same time my neurologist diagnosed me with RSD in the right arm and right shoulder (where all my pain was) and recommended that I not have surgery. After much debate I opted for the surgery hoping that all my symptoms were from a herniated disc. After all that was an easy fix. Six weeks and I would be as good as new and back at work. (I am a RN and was in big time denial that I had RSD. Nurses and doctors make horrible patients.) After surgery I knew I had made a mistake. Not only did I still have the pain in my arm and shoulder but it spread to my neck (where the incision was) as well. Just a note**I did have a severely herniated disc that had entrapped the C4/C5 nerve root for so long that it permanently damaged the nerve and that led to the RSD.** I was able to return to work for a few months (3 or 4) but then the RSD spread to my rib cage and chest wall on the right side. The pain became so severe and the hospital I worked for had a no narcotic policy. I took short term disability and during that time had a spinal cord stimulator placed and again was able to return to work for another 4 months. However, the spinal cord stimulator stopped helping my pain and as before the RSD continued to spread to my left arm, my sternum, my left chest wall and rib cage. At that time I had to go on full disability. Since that time the RSD has continued to spread to my spine and internal organs. It now affects my heart and stomach as well. The only places not affected so far are my legs and my head. I am in no way saying this is the course that your husband will take just warning you that if it is RSD be very careful of any type of surgery. RSD is a very individual disease but it is a MONSTER. I pray for your husband's sake it is TOS and not RSD but if it is RSD please know that there is a lot of support here. I will keep you both in my prayers.

Cricket

I am so sorry the Doctors are treating you like this. If it were me (my husband has RSD), I would look around the area for a Doc who specializes in RSD, or at least, one who has treated several cases. You cannot make a good dicision until you have a proper diagnosis. This website is good for that. People on here are willing to help. Good Luck and soft hugs.
Mary

You are right. The ups and downs are sometimes worse(ok maybe not, but they seem so) than the pain. Don't let them get you down though, put it behind you or climb over it and get stronger. Keep on keeping on though because you need clear thinking to make these decisions. Especially in something this big. I'll be praying you get clarity, and that the drs will try and see your perspective of the risk and benefits.

Make the most of the day you have today!

Camick,
I was T-Boned by a tractor trailer in 83. (back then, NOBODY knew what RSD or TOS was).
It took me 7 LONG years and more than 100 doctors, until finally my chiro had a client with RSD. He got me in immediately to see Dr S, in Philly. Who confirmed the RSD. Of course, now it's full body. (If it's in you, chances are likely it will eventually go that way) sad to say. Dr S also did the 'Arms up / rotate shoulders back test, which you can do at home, and you'll see there is no pulse, and the hand/s turn white from loss of circulation.
He sent me to the Hand center in Philly to see Dr James Hunter. This guy looked at me for a moment and knew I had TOS. To be comfortable, a TOS patient generally will 'settle in' with his arms rotated forward, and hands in lap. (sitting). Raising arms is a no no. As is extended reaching.

Fortunately, I got hold of Dr Schwartzman's report(s), which were intended for trial. Actually, the deposition. His description there, ruled out ANY surgery for me. The possible and probable side effects are worrisome. I was told by Dr S, correctly that my upper musculature, i.e. the muscle that cover my shoulder blades, and surround the Thoracic Outlet, would atrophy. And, so it has happened. Much to my relief!

Things can always be worse. In 98, a woman blew a stop sign, and my head was jammed into the windshield. TBI, four herniations, and more other problems than a stick could be shook at. I've lost two business', two homes, and just about everything I've ever had, worked for and, for lack of understanding, the love of some close people. I've also gained a lot of insight, have many wonderful friends, and a heck of a lot of pain.

My prayers go to your husband and yourself.
Keep in mind, as I do, and we all do, that someone somewhere, has it much worse!

"Nothing ever stays the same, blame your madness on sorrow, BUT, be a happy man!"

Don't rush into ANY surgery. If your husband is muscular, a working man, as opposed to a pencil pusher, this may heal itself. Get some of the good hot packs, and muscle relaxers will be appropriate imho. Ask you doctor. He needs to find comfort wherever it may hide. A Good Neurologist, who knows these things may be well able to treat him, without surgery! (That's my deal). With RSD, we stay away from the knife!

If you or he'd like to talk, PM me, and I'll call or write back!
I have more than 27 years with your husband's exact dx. I know what it is!


Pete
asb

Thank you. It has been a crazy ride, and I know it's not over until my husband is no longer in this pain. The TOS doc let my husband know today that he will be doing the surgery next week. Crossing my fingers (and toes) that he does not have RSD, and that this surgery ends his pain.

Hi Camick,

I have both TOS and RSD (and Fibromyalgia to complete the trinity.....seems like the 3 go together a lot).

I think part of your focus should be on finding out what type of TOS he has......if it is neuro, venous, or arterial. If it is primarily neuro, like me, and pain is the biggest issue, you have to consider that the surgery might make the pain even worse. If it is primarily venous and he is at high risk for clots, the surgery might be necessary to prevent him from shooting a lethal clot.

If he does need surgery, they can take the RSD into account and do a regional anesthetic block to help decrease the likelihood of the RSD spreading/getting worse.

I would want to be evaluated by a doctor who understands BOTH diagnoses very well.

I would be reluctant to go by the decision of a thoracic surgeon alone. I don't think a surgeon would be very experienced in dealing with RSD and my fear would be he might be gung ho to cut, because that's what they do......or just scared off by a complicated case. I'd be afraid the surgeon would be thinking of his own success rate in deciding for or against surgery, more than focusing on what is best for your husband's predicament.

I hope that doesn't sound too anti-surgeon, if one happens to be reading this. There are many threads on the TOS board recommending certain doctors who specialize in the treatment and possible surgery of TOS patients. I would be more comfortable listening to their decision than of a thoracic surgeon who does all kinds of thoracic surgery and doesn't follow the patients.

Just my 2 cents.

Good luck with your research. Don't rush into any decision.

Thanks everyone. My husband's surgery went well. The doctor said he had a lot of nerve damage and a bunch of scar tissue mixed into the nerves covering the rib. He cleaned that up, removed the rib, and cut the nerve that would have caused the RSD if he had it. My husband can finally feel his arm again like it should normally feel. His nerve pain is gone. Now he is just dealing with the pain of the surgery, and getting his shoulder moving again.

Camick,
I wish the best for your husband and your family.

I hope you keep us posted on his progress!

Prayers,

Pete