My husband has been in pain since the second day after shoulder surgery in March 2010. The shoulder surgery was mainly to remove bone spurs that the doctor thought was causing his shoulder pain at the time. After surgery he didn't have the pain that he had before surgery...so the surgery seemed to work for that pain. But once the nerve block started wearing off, he had a different more intense pain.

He told the surgeon about this new pain, but the surgeon bluffed it off, gave him a shot, and said come back in a month to see if its any better. A month later, the surgeon did the same thing.

During these two months he was going to physical therapy, and the pain was increasing. He can no longer raise his arm above his head. The PT finally did a test that showed his pulse went away when he tried to raise his arm above his head, and he said that he might have TOS.

When my husband tried to contact the surgeon to talk about TOS, the surgeon was on a 6 week vacation.

During this time period, my husband tried to go to other doctors, but nobody would touch him.

Finally the surgeon came back from vacation, and sent him to a thoracic surgeon in town because he didn't think it was TOS.

The thoracic surgeon didn't want to touch him either, so he sent him to a doc in Dallas...3 hours away.

In the meantime, the surgeon sets him up with another doc in Dallas who is supposedly a guru shoulder surgeon to see if he had something else going wrong with his shoulder. But the secretary who was supposed to set up the appointment sent his information to the wrong doctor. It was a month later before the appt was finally made.

A few weeks ago, he went to the thoracic surgeon in Dallas and was diagnosed with TOS. The doc told him he had it and the only fix was surgery. So he set up surgery for the soonest available time which is after Thanksgiving.

Well, this week he finally had the other appt with the shoulder surgeon in Dallas. Now this doc is saying he "thinks" my husband might have RSD, and that he must not have the TOS surgery.

Yesterday, the TOS surgeon canceled the surgery, and said it was because he has been doing this for years and knows what he is doing. My husband was in a deep depression last night when I came home from work. All he could think about was he has been in pain for almost 9 months and he is about to get shuffled around again because nobody wants to touch him.

Now today, the TOS surgeon calls him back and says the surgery is back on if my husband wants to do it. The doc met with the shoulder surgeon and looked at the tests that were done this week. He says my husband has extremely severe TOS and really needs the surgery. But he didn't want to do the surgery because if he does have RSD the surgery will make it worse. But if he does not have RSD, the surgery should make it better.

We are soooo confused. It's a 50/50 chance that his pain will not get worse. Has anyone else gone thru this toss up decision? What decision did you make? And what was the outcome?

Thanks!

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.

I placed a copy of this thread on our RSD forum also, between both forums you should get some ideas on the best way to proceed.

Your thread on the RSD forum -
http://neurotalk.psychcentral.com/sh...d.php?t=138889

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

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.

We found out last Thursday that my husband's sister had the TOS surgery and is feeling much better. We also found out his Dad's brother was in the same pain for the last 10 years of his life and probably had TOS too. Is TOS genetic or hereditary?

I think it can be a body type or maybe some hereditary anomaly that can run in families...

any of them have extra cervical ribs?

did you see this part of a reply on the RSD forum by finz?

[ 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.]

while waiting on surgery might try TCOM for 2nd opinion and OMT relief. i wish i lived near it. Get dr gamber if you can.

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.