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.

I copied this from the intro sticky thread- for more hellos and sharing.


A few members have had a condition called "Frozen shoulder/s" from not moving enough, that is not fun at all.

Thanks for sharing your story Mark,

Chronic pain is disabling and not well understood by "normals". I hope that you are able to see a pain management specialist to help you along in your journey.

Thanks for sharing Mark. You are not alone here, and you will find the forums a place of widely different experiences and people to learn from. Posters here experience similar feelings and discomfort as you have so it is a good resource for how to deal with the frustrations.

Can you get on voice recognition software for your job, posting on these forums, etc?

unfortunatly the scar matter, adhesions cause as much pain as the TOS, they create the same contriction as the impinments and entrapments. Would be better had TOS surgery been a scope operation instead of the invasive truma that it is.
I hope that you can find accomadations that will help. Many long timers around here. Some of us not in as much, when we activily search help the first place we come. Then we reach max improvement and just try to to live with TOS not TOS control us.
So many ways to accomadate our lives, and learn what flares.

Welcome to the forum, Mark.
Di

thanks all!!

I recently have started having a feeling something like whatyou feel after having a tooth filled from the anesthetic used, on the right side of my face from below my eye to my neck. The right side of my neck has been numb / feeling different for over a year or more.

Anyone else have anything like this involving the face / neck?

Could TOS cause face numbness / pins and needles?

Also I am looking for a new TOS doctor or clinic. I live in Southern Ohio and there is no doctors in this area that are real experienced with this. I have talked to Doctor Filler in California and read about Washington University Center for Thoracic Outlet Syndrome at Barnes-Jewish Hospital. Both of those are at least 8 hours driving time from me. The California clinc would be over 8 hours time driving to Columbus and then flying there.

You'll definitely need a TOS detective/expert with the other issues you have happening.

If none are listed close enough for you, Maybe a call or email to a few of the doctors listed asking if they can recommend someone in your area??

Send the details in your first post so they know of the complicating factors.

Who knows, they may offer some help or at least share names of some others that can help you in your area.

http://surgery.wustl.edu/TOS_Consortium.aspx
http://surgery.wustl.edu/TOS_Health_...essionals.aspx

From looking at a map, seems like east coast would be closest for making contact & requests.

I had a numbness in my face behind my eyes to my mouth. However, this was directly related to horrible muscle spasms in the neck and head with accompanying occipital neuralgia and TMJ pain. The theory was that my neck tension led to compression of the occipital nerve which led to head tension and compression of the cranial nerve which lead to the face stuff. I'm just glad its under control now but I did get a full workup (MRI of brain and C-Spine) to make sure it wasn't anything emergent.

How far is the drive to Cleveland for you? I believe they have good TOS expertise at the Cleveland Clinic. I think flying to California (especially for Dr. Filler) will be a waste of time for you. You have a very complex case and Filler is not equipped for these IMO. Here would be my recommendations for you to look into:

Cleveland Clinic: Dr. Daniel Clair
St. Louis: Dr. Thompson
Denver: Dr. Brantigan (there is a Dr. Annest there as well)
Massachussets: Dr. Dean Donahue
Maryland: Dr. Julie Ann Freischlag

Nospam, compression of the cranial nerves--have you ever had Bell's Palsy? I had it when I was pregnant with my son, and have had very minor episodes over the years. Right after my surgery I had a few signs of it which had them worried I'd had a stroke (same thing during pregnancy). Fortunately it resolved in a few days. I'm sure the removal of the anterior scalene triggered something in those nerves. Again, no lingering effects, so I'm lucky.