[brmr19]

moltra, I feel your pain. I am 43yr old with bilateral TOS. I had the surgery on the left side sept 2011 and I am still feeling the pain and burning. I was a police officer and very active. I am still waiting for my disability, which I filed 6 months ago. I am told my hearing is April 25th. I have found it is a fine line between using the arm a little or to much before symptoms kick off. The nights have been the worst. good luck to you.

[Sheri_TOS]

Originally Posted by moltra

I am a 45 man, I started having neck pain back in 1995 while in the US Navy. The navy dit xrays and mri's and all they thought I had was a vertibre in my neck that was not moving correctly. The did PT and traction on my neck. I also started to get tingling and "numbness" in my ring and little finger on both hands.

I got out of the USN in 2000 and filed for disability compensation with the Veterans Administration. I was initial rated at 20% due to the neck stiffness and Arthritis in my neck.

I was seeing a xray done for a normal work physical around 2002 and the xray technician came back in the room after taking my xray and asked if I had staves in my collar. She did not ask my to take off my shirt for the xray. We checked and saw that I did not have staves in the collar. I took a copy of the xray to the VA doctors and they decided that I had TOS due to extra 1st rib bilaterially.

The symtoms tingling and numbness and limited neck rotation at times, kept getting worse, until my doctor and I decided to remove the right 1 st rib to give the nerves more room in 2005. After the 2 hour surgery the doctor told me and my family that the nerve did not go straight through the muscles like it suppose to, rather is is wrapped all in and around the nerve. I had a huge improvement on my right arm. I only have problems with my right arm if I try and do something above horizontal with the right arm.

After I had this surgery my left arm starting to bother me more and more. numbness, burning, feeling like it was asleep for months on end. So in 2007 I decided to have the left 1st rib removed. I had relief for about a month then it came back hard. I then read an article about how the minor pectorial muscle could be pinching the nerve, I talked to my pain doctor and he gave me a shot in the mucle and the pain went away almost instantly. So I had my left minor pectorial muscle detached in 2009. I had relief for about 3 months, then the symptoms started coming back more and more. My right arm is still almost normal, but weak, my left arm hurts me almost of the time now.

I have also developed athritis in both shoulders due to the not moving my shoulders fully.

So I have 3 scars on my shoulders and chest from the surgeries and stll in alot of pain. I can not let my arms stay in one position very long or they start aching from the athritis, but If I move them to much the TOS kicks in. Especially the left. For the past 5 year the majority of the work I do has been on the computer so that make everything worse. I have a request for increase in my disability from the VA, and I am starting to think, if it is increase of just giving up working and trying to survive this pain. I cannot stand not being busy so If I do this it will be a big change. I am sitting here, almost in tears because my left are is burning and I had my arm just barely touching a notepad and I had to move the notepad cause it felt like a knife cutting my forearm.

sorry if this was a long post, had to get some of this off my chest. which hurts all the time from the TOS and surgeries. I have routine stress tests annually and had a left and right heart cath this year cause I have two of the symptoms of a heart attach almost daily.

Mark.

Mark - Believe me, we all feel what you are going through in one way or another. The forum is a good place to touch base with others dealing with similar issues.

[sealeg]

Hello fellow TOS sufferers:

I am new to the board. Was diagnosed in November of 2011, but really started showing symtoms in May of 2011 -- ended up waking up out of the blue one morning with a swollen right hand all the way up to my elbow. Within a couple days I was diagnosed at the hospital with a blood clot and the rest of the follow ups led me to my diagnosis several months later of venous thoracic outlet syndrome. Apparantly, there is only ONE specialist in Toronto who performs this surgery and he is currently transferring these skills to another surgeon (and will no longer be doing this type of surgery). As a result, I have been waiting and waiting and waiting....been told I need surgery, but STILL have yet to meet with the new surgeon who will be doing it. How frustrating! Anyone else from Toronto on this message board, or anyone else have similar experience?

Thanks everyone!

[Jlorainne]

I've never used a site like this before. I'm not sure where to start. I have TOS. I was diagnosed by Dr. Dean Donahue at Mass General. He is wonderful! However I live in Indiana and cannot drive 17hrs every time I need to see him. I am now talking to the Thoracic Outlet Syndrome Center in St Louis, MO. My first appointment with them is May 30th. Anyone know anything about them?

I have been working with a Chiropractor who has a masseuse on staff. They have been amazing. I can function again. I was able to do this instead of the botox treatments. Not a fan of those! However my chiro and I believe we have come as far as we can on that front, and I am now thinking surgery will be necessary. I'm very scared. I have not been able to find enough info on what happens after surgery.....

I'm so glad I found this community.

Jess

[Jomar]

sealeg & Jlorainne, Hello & welcome.

I placed copies of your posts on the main TOS threads section , so members can say hello and offer support.
Here is the link -
http://neurotalk.psychcentral.com/forum24.html

[smokin_joes_cbr]

Hey everybody I'm new to the forum. This seems to be one of the only forums that I can find that is fairly active on the subject of TOS so I figured I would sign up and tell you all a little about my history. In march of 2011 I started having aching pains in my left shoulder from out of nowhere and swelling in my arm, I went to a local clinic and was told it might be something vascular and that I needed to go to the ER immediately. After spending a long night in the ER and after an ultrasound they discovered a clot in my subclavian vein. I was promplty started on lovenox and coumadin and spent a week in the hospital, after which I was released and told to keep taking coumadin and follow up with my doctor. Fast foward to August 2011, I finally got an appointment with a vascular surgeon at UCLA medical center named Dr. Hugh Gelabert who has expertise in the area of TOS and Paget Schroetter's. After some exams I was diagnosed with Paget Schroetter's syndrome and told it was likely due to physical strain that had exacerbated the condition I already had and never knew. On Sept 29 2011 I went in for first rib resection surgery (transaxillary) and 2 weeks after had a venogram and venoplasty done on the subclavian vein. I am currently having some issues with the right side and am having a venogram done tomorrow to see if the same conditions exists there. If anybody has any questions in regards to the surgery, recovery, or any other related things I would be happy to answer them.

John

[sealeg]

Wow. You have described my exact experience. In fact, I am not thinking that at times, I feel similar symtoms on my left side, but hard to tell if I am being paranoid. I will raise this with my surgeon when I finally get an appointment. I notice I have a bulging vein on both arms (where previously I only had it on the affected side/arm). In addition, I feel the same chest pain on the left side that had only been exclusive to my right/affected side. Good thing I am on coumadin or I would be more concerned. Will be interesting to see the outcome once I have the opportunity to investigate. Good luck with your journey.

[smokin_joes_cbr]

I just had the venogram on my right arm done yesterday. There is very minimal narrowing in the subclavian vein and the doctor gave me a clean bill of health. An interesting thing that I have noted over the past few months is when I'm doing overhead work my left arm gets less fatigue and cramping compared to my right. It has still only been 7 months since the surgery but I could venture to say it was a success (knock on wood).

[starfish43]

Hi,
Diagnosed with Paget Schroetter while in hospital with DVT. Female office worker took dip in pool which somehow triggered it and now her whole life is changed. Age 43. Trying to learn more about surgery and various options for treatment.

[andreaa27]

Hello,

I had rotator cuff, labrum, frozen shoulder surgery in October of 2011. After the surgery, I woke with a numb hand. It was believed to be related to the pain pump, then I was told carpal tunnel and workman's comp said they were not treating my hand injury.

Seeing a physiologist and ortho, I was diagnosed with a brachial plexus injury. Although the constant tingling diminished in my hand, it still just doesn't feel right. My arm is tired feeling, I have tingling from my shoulder to hand in certain positions and EMG shows nerve damage and muscle atrophy. And the physiologist feels it is TOS. I had a vascular study yesterday and it showed issues on my left side although all symptoms are on the right side.

Not sure what happens from here, waiting to hear from doctor and what options there are for treatment. Any suggestions would be appreciated.