all i can say is im happy to know after 9 years of this 11.5 year battle with TOS, RSD & CRPS. Just before workmans comp case comes to fruition this month. Unfortunatley, wc judge wont allow any new discovery in. grrrr and a big fat sigh

http://tossociety.org/blog/

http://www.facebook.com/#!/pages/TOS...37222899621077

Hi olecyn,

OMG, it's not often that someone has a problem like myself. Just to give you a little background. Broke my elbow with collateral ligament detachment and needed repair, elbow to broken to pin so titanium was inserted with major complications,had 2 manuipulations under anthesthia, 2 contracture releases, 1 ulnar nerve transposition ,collateral ligament repair, nerve frezzing procedure, 3 - 5 day inpatient ketamine procedures for the RSD, so many pain management procedures I've lost count and a total of around 45 days or more in the hospital. But left with one problem a strange pain in the elbow on the inner part of the arm and rsd of course.

I could not access any of the links you provided. I would be so grateful if you would share with me what strange problem/pain you are having. I have worked with some of the best doctors on the East Coast from Boston, NYC to Maryland, and Philly and nobody can even find the problem and some just look at me and say you got that much range of motion and functioning don't even touch it. I mean my PM Doctor know's I'm in pain but nobody wants to do anymore investigation because I guess I'm not falling on the floor screaming in pain, but I do suffer everyday. If you looked at me you would think I'm completely normal, the arm is just slightly swollen so unless you really looked you wouldn't even notice it and the scars where hidden beautifully.

It's exciting to meet you.

Gabbycakes

I also have TOS, ulnar nerve and carpel tunnel. I've never had any operation for it. I use the lidocaine patches on my neck, as near my elbow as I can, and just above my wrists.

TOS often gets better on its on, due to muscle atrophy. That's a strange thing to count on though. (I was muscular when I got it, and my docs told me that body builders often bring it (TOS) on themselves.)

The biggest problem is with overuse or exertion of the arm and neck muscles.
Be careful!
Be well!

Pete
asb

RSD & FM on its own is just a component of TOS due to the longevity of the brain receptors firing constantly. Yeah for us! 10 conditions rolled into one.

Gabbycakes: just use the TOSsociety.org then click on the blog. Thats so i dont have to re-type. The facebook is the sister TOSsociety. Yo, gabbycakes your elbow has been thru the ringer; geesh. I am so sorry. Sounds just awful. Does it seem like ortho's et all go in an just explore with fingers crossed of a good outcome or what? In my case it was a neurosurgeon who did the ulnar nerve decompression simultaneously as the bi-lateral decompression of the brachial plexus and the anterior scalenectomy. 9 1/2 yrs of this workers comp denying and ignoring bs, im sure its way beyond repair now.

Pete: i have been told that swimmers, body builders, dancers et all can over exert the muscles taking up too much room of the tiny triangle BP areas causing compressions creating the lovely TOS.

Much research to do before making a decision on this one.
huge sigh

Olecyn,

Thank you so much for getting back to me. Maybe you think I'm a little nuts but I feel like a little kid you just found there best friend. Nobody but my PM Doctor and Surgeon know what I have been through unless you happen to meet someone like yourself which I never do. The Elbow is such a difficult area to fix once it's broke, who would of thunk...It has beeen explained to me if you think about it it's the only joint in the body that moves up and down,left to right and it also controls a lot of your hand/wrist/and finger movements. Working with the last set of doctors, unfortunately for me it took a few doctors until I found the right one and it was only luck that I found the people at the Hospital for Special Surgery in NY. What a place. I have never even heard of the place until I got hurt. My surgeon was a orthopedic surgeon specializing in the elbow, contractures of all kinds, micro nerve surgery and considered the best in the world. His name is Robert N. Hotchkiss, MD. He's a wonderful man takes a little getting used to very business, trained at John Hopkins. He saved my life. He did do one exploratory surgery to find what another doctor thought might be my problem. They went looking for a neuroma and did not find it. My PM doctor and him are on staff at the same hospital a matter of fact I meet my PM first and he indroduced me to Dr. Hotchkiss. Acutally the 2 of them saved my life. I would joke with Dr. Hotchkiss after I was seeing such progress after 2 years of no progress and no answers from the doctors I was seeing prior to him, "if you say jump off that building I would do it", just joking of course.

I don't have any brachial plexus issues and I have heard that can just be a b.... of a problem to fix, and hope your ok from that one.

I've been educated about the brachial plexus because during my many surgeries at HSS they used that area for interscalene blocks. I had to use a CPM Machine(continue passive motiom), immediately after each surgery as we went along because my main problem in getting the ROM back was scar tissue. So instead of being on a morphine pump each time to control the pain of moving my arm immediately after a surgery the did this high tech interscalene block which kept my arm completely numb and was able to stand the pain and discomfort of the CPM Machine. I hated that machine I also had to use it at home for 4 weeks 8 hours a day, at 2 hour intervels. It was like being tortured, but I did it and was successful. After all said and done I do have great strength, functioning, ROM but I have very little endurance i.e. like sweeping, vaccuming, stretching to wipe something etc. But I have made it back to work PT. I'm a Office Manager/Bookkeeper for a small business 2 miles from my house. I don't work many hours but it helps get me out I can't stand sitting in the house.

I don't mean to sound dumb and I will go on the TOS sight to get more educated. I have never heard or read how TOS has any relation to the elbow?

Again thank you so much and sorry to ramble.

Gabbycakes

I too had TOS as a result of a car accident 22 years ago..I had both first ribs removed along with a sympathetomy on each side.. Now I have RSD also... correlation??

Hugz, Kathy

Kathy,
I was T Boned by a semi, and got rsd and tos (brachial plexus type), and Dr S, in Philly told me it's a common set of injuries. (Yea, well he's real smart). While other docs scratched their heads. Anyway, TOS can have effects that go up and cause monster headaches, and, down your arms, causing ulnar nerve and carpel tunnel. (all of which I have). There may be more. I do know that when I use my arms for strength, it can trigger a migraine. Or, worse, cluster HA. As I said, the lidocaine patches do work well. And, I take imetrex and other similar meds for the headaches.
That was in 83, then in 98, another accident, traumatic brain injury subdural hematoma, and four discs (two in neck, two low back) I actually heard them 'click' before I lost consciousness.
Now, I wonder how my head stays on, or up! Hah!

The nasty thing, is that back in 83, it took me 7 years to get a diagnoses, and it started with a chiro, who had another patient with lupus/rsd, seeing Dr Schwartzman.
Luckily, he was able to get me in within weeks!

I wish you, and everyone well!

pete
asb

Pete,

So you have been thru the mill with vehicle accidents and the trauma too.. like many here.. So TOS does not go away?? ie. arm strength and headaches..I too am a migraine headache.. morning wake-up headches are especially terrible .. I attributed them to RSD..Some reason my thoraxic surgeon cut my sympathetic nerve bilaterially during my rib removal.. that surgery was no picnic..and I had it twice..one rib both sides..UHG!!

I wish you and everyone here a great night..Thanks for your post, Pete..

KS

How interesting. I've never been diagnosed with TOS. And I don't have all of the symptoms, for instance, when I hold my arms up my hands don't go numb or turn white or whatever they are supposed to do to confirm the diagnosis.

But since I've had RSD, I get severe migraines when I use my arms for anything strenuous. (I had never had a migraine before I had RSD!) The migraines hit in the middle of the night or in the morning, 6-12 hours after the activity. I've learned to be really careful with how much stress I put on my arm and shoulder muscles and to not do anything that causes vibrations - like raking - to go up my arms into my neck and head. My RSD was from a rotator cuff injury in Nov of 2006. I also sleep with a foam cervical pillow to keep my neck straight, because my neck is also a weak spot for me.

My PT gave me neck stretches to do that have helped enormously. I try not to let the muscles in the side and back of my neck get too tight because I think that could also be a contributing factor for my migraines.

I am much better than I was because of low dose ketamine infusions (I just had #32 on Friday), and my functionality has slowly started to improve. But I still need to be really, really careful with my arms. I was a lifeguard on the beach when I was younger, and really built, but now my shoulders and arms are all skinny from disuse. Its kind of a bummer...

Good to see you posting Kathy, welcome back!! XOXOX Sandy

Sandy,

Interesting again, as I have found I can not sleep at night with any around my neck such a hoodie sweatshirt and due to the hood.. as I always wake up with these miserible headaches .. the pain is worse on the left side of my head..all of this since my RSD..

I appreciate you welcoming me back..thank you very much..I am trying very hard .. just still trying to get thru my heart broken merky waters.. but Iam really trying..

Hugz, Kathy