TOS and possible RSD
 

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.

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

Hi Camick,Please listen to the RN-wise information. I'm in my 15th year with RSD and now full body and internal organs. It is not unusual for Drs. to refuse to see a patient who possibly might have RSD-they certainly don't want to be drawn into a lawsuit or conflict with another of their golf buddies.
I wasn't diagnosed for 4 years. Immediately following breast benign tumor surgery, I got frozen shoulder. I had 100 physical therapy and same # massage therapy. I feel the massage therapy was a big factor in getting my range of motion back. 1/2 way thru pt, my Rehab Dr. sent me to ortho surgeon who wanted to operate and speed up motion by surgery. I said no and my insurance agreed to pay for massage therapy given the choice of massage or surgery by me.
The therapist told me not to be surprised if the frozen shoulder moved to other side. I thought that was unusual. Well it did-more therapy. I now believe several Drs. therapist knew I had RSD, but don't really know.
While water skiing, felt my left hand nerve pull. RSD, but not yet diagnosed. Dr. said RA. I flew from Arizona to Oregon sports injury group and saw hand Doc and he said within a minute RSD. Sent me to hospital for nuclear med dye test and confirmed RSD. That changed my life. Sports injury groups in my opinion are more apt to know about RSD. The ones that are 'team drs. professional sports.
Have you watched the show mystery diagnosis? I've written down certain hospitals and Drs. that are more into the unusual diagnosis.
One of the most helpful things I've experiences is when my neuro suggested I see a psych. when I was diagnosed full body or generalized. I didn't like his two suggestions, but found one myself. Board certified neurologist, pspychiatrist, pharmacologist along with HBOT. From New York-family of Drs. and the pharmaceutical companies use him for trial studies. He also teaches. He is the one that got my mixture of meds right, so I sleep 10 hrs a day. He is conservative on meds. There are meds that work on nerve pain, so I don't have to be on high doses of opiods. Before the trial study that helped my sleep, I didn't go to sleep EVERY NIGHT till about 6 in the am.
I've been seeing him for 6 years.
If you go to rsd.rx.com puzzles list -it is a very informative website by Dr. Hooshmand from Florida, now retired. Also RSDSA.com is good and can put in your zip code to find RSD support group meetings.
If you care to put your state in, you may get more suggestions of DRS. When I made the appointment in Oregon, I said nothing about my history, just asked for a consult.
This is a wonderful group of compassionate friends. Depression is actually part of RSD. RSD affects the Limbic System of the brain that affects short term memory and depression, judgment etc.
Take care, one of your new friends, loretta:grouphug:

:hug: 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

:hug: 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.