[piratemet]

Originally Posted by chroma

Nice to meet a fellow pec minor syndrome patient! Although I got excited thinking you were going to reveal what your PT did for it that worked. LOL

Does your left shoulder sit lower than the right when you stand square in front of the mirror with your arms at your sides?

Do let us know how things go. We all benefit by sharing information.

My left shoulder does indeed sit lower than my right and when lying on my back my left shoulder is off the table considerably more than my right. There were definitely stretches that my PT did that targeted the pec minor that really worked to open things up - I've had my husband try to do the same ones because I can't do them by myself, I need a passive stretch for those.

My new TOS doc gave me a script for more PT if I want it and I'm debating it. I think I'd like to find a place with hydrotherapy but I really liked my last PT so I'm torn. Also, my semester is starting up (I'm a professor at a local university) and I'm going to be less able to get to therapy 3x/week. Sigh.

I called for the scalene block today and had the xray so at least things are moving in the right direction....it's only been 4 years

[Ldraper]

On Jan 13, I had surgery for right side TOS. I am 43 years old and teach Kindergarten, but the pain from TOS made it impossible to work so I took this school year off to try to get my symptoms under control. I was scared to death to have this procedure, especially after reading some of the posts on these forums. My symptoms started 5 years ago, but it wasn't until 18 months ago that I got the TOS diagnosis from a neurosurgeon. I went the conservative route for 16 months with symptoms getting worse and finally decided on surgery. I am lucky enough to live 25 miles away from 2 excellent neurosurgeons who each perform an average of 4 rib resections per month, so I was in experienced hands. My surgery was performed by Lynn Gaufin in Provo Utah. Before the surgery I was diagnosed with neurogenic TOS, however during the surgery the surgeon found that the subclavian artery and vein were also being impinged by the first rib, and that there was excessive scarring between the scalenus mediums and brachial plexus. The first rib was extremely wide and acted as a shelf with the artery running across it and then dropping off. As the Dr said, it was a real mess in there!The first week post surgery was rough, especially since I had 2 allergic reactions to 2 different painkillers. Last week I decided to just do 3200 mg ibuprofen and lots of heat and ice. Today was my 4 week post op appt. and I am doing pretty good. The Dr had me do exercises starting on day 3 and now I will start on a couple weeks of PT to help stretch the neck. I can already feel a positive difference and while I know I have a ways to go until I feel like myself I am so glad I did this!

[mitsy]

Originally Posted by law76

SINCE THE OTHER SITE IS DOWN...I GOT HURT AT WORK ABOUT FOUR YEARS AGO..OFF WORK FOR TWO.....ALSO HAVE HERNIATED DISCS IN NECK AND FYBRO...POST-SURGICAL FOR RT SIDE RIB RESECTION.

Hi, I am new here and just read your posts. I too have TOS and am in desperate need of a Dr. that works with Blue Cross. I have been seeing Dr. Jordan but I can't afford him. Do you have any suggestions? I hope you are doing better now.
Thank you, Mitsy

[Anne785913]

I have an extra set of ribs coming off the first rib, because my body did not have space for these ribs the right side pushed into the subclavian artery and caused an aneurism which sent blood clots into my right arm and hand. No accident caused it to happen just the extra rib pushing for space. I was studying abroad so I was not at home to get anything checked out and during this period of time my arm and hand slowly went from tingling and my fingers turning white to looking like I had a stroke. The blood clots were in every vein and artery in my arm and hand. It killed the radial artery leading to my thumb and hand area which had to be replaced with a vein in my leg and if that did not work I would have lost my right arm up to my elbow. They then provided to pull the clots out of all the veins and arteries. Extreme nerve damage was done because everything had gotten to the worst possible point before the surgeries. They had to take a vein from my other leg to put around the aneurism because it was to tangled in with everything in that area that could cause more damage which also meant the extra rib could not be taken out, but it has done all the damage it can on the right side so they say! I am about 7 months out of the surgeries and still feel the healing process at work .

[chroma]

Originally Posted by Anne785913

I have an extra set of ribs coming off the first rib, because my body did not have space for these ribs the right side pushed into the subclavian artery and caused an aneurism which sent blood clots into my right arm and hand. No accident caused it to happen just the extra rib pushing for space. I was studying abroad so I was not at home to get anything checked out and during this period of time my arm and hand slowly went from tingling and my fingers turning white to looking like I had a stroke. The blood clots were in every vein and artery in my arm and hand. It killed the radial artery leading to my thumb and hand area which had to be replaced with a vein in my leg and if that did not work I would have lost my right arm up to my elbow. They then provided to pull the clots out of all the veins and arteries. Extreme nerve damage was done because everything had gotten to the worst possible point before the surgeries. They had to take a vein from my other leg to put around the aneurism because it was to tangled in with everything in that area that could cause more damage which also meant the extra rib could not be taken out, but it has done all the damage it can on the right side so they say! I am about 7 months out of the surgeries and still feel the healing process at work .

Wow! Congrats on getting the arm saved and getting the surgery you needed. Thanks for sharing your story.

[mitsy]

Originally Posted by law76

SINCE THE OTHER SITE IS DOWN...I GOT HURT AT WORK ABOUT FOUR YEARS AGO..OFF WORK FOR TWO.....ALSO HAVE HERNIATED DISCS IN NECK AND FYBRO...POST-SURGICAL FOR RT SIDE RIB RESECTION.

I wrote you a few weeks ago regarding Dr.'s and you sent me the link of them. I noticed you live in L.A. I live in Calabasas and am trying to find a Dr. I can trust. So far I have been to over a dozen. Would you mind telling me who did you TOS angiogram and then surgery? Are you happy with the results? I was seeing Dr. Jordan but can't afford him anymore, I have to go to a Blue Cross provider. Thank you so much for all of your help and info.

Best,mitsy

[Leslie87]

so glad I found this. I'm sure my story is similar to others: after years of symptoms and dealing with pain and doctors telling me I had everything (or nothing) under the sun, I was finally referred to a vascular surgeon whom I saw last week. Today we did a scalene block... I'm worried since so far my smyptoms haven't gone away while I have heard fantastic stories of people feeling like normal... we'll see what happens.
Happy I found this group! can't wait to learn more and talk to others about this. I think that is the hardest thing sometimes.

Leslie

[hsulcsw]

hi im laurie. injured 4 years ago at work, off for two. TOS caused me to adopt a lean to compensate for not being able to support my shoulder and i a strain of my sacroilliac joint. WC sceduled surgical consult for TOS but my primary doc is telling me never to allow them to operate! Confused as how to proceed! I just want my life back



I copied this to the main section of the TOS forum for you -
here is the link to it- Jo*mar
http://neurotalk.psychcentral.com/thread167776.html

[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.

[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.