thoracic outlet syndrome (TOS)

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solar powered
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   Posted 12/28/2010 4:12 PM (GMT -6)   
Hello. I hope everyone is doing well today. One of my pain problems is my left shoulder. Most of the issues stems from the fact that the joint is very unstable so the head of the humerus slides around into positions that it should not be in. Along with the pain in the joint and biceps I occasionally get some numbness and tingling in the heel of that hand and fingertips which I assumed was from nerve compression in the shoulder joint. Yesterday my doctor brought up the possibility that the numbness/tingling may be from thoracic outlet syndrome instead. So my question is, does anyone on here have any experience with that problem and if so, how did it turn out? I would really like to hear what you have to say regardless if it is good or bad. Thanks very much, Lee
Attitude is everything.

straydog
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Date Joined Feb 2003
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   Posted 12/28/2010 4:32 PM (GMT -6)   
Hi Solar Powered, yes I know some about thoracic outlet. If you have not done a google search on this condition, I would and read up on it, to see if any of your symptoms fit the picture here or not. Probably one of the better sites would be go to the Mayo Clinic site and type it in and you will get good reliable info from them. Not all places on the web is that credible. The folks that had this condition were clients of ours, some were treated conservatively and some had surgery. I know back in the early 90's there was only two drs in this area that would do thoracic outlet surgery, it is not a favorable one to undergo. Basically they go in an remove a rib. Back then it was a very painful surgery to undergo. I do not know how it is today. But, finding a surgeon was a big problem here and we have a teaching hospital and none of them did this surgery. I am not trying to scare you or anything just telling you up front what I know about it.

For your sake I do hope it is something else, what made your dr think this anyway???
Moderator Chronic Pain Forum

solar powered
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   Posted 12/28/2010 7:56 PM (GMT -6)   
Hi Stray. Thanks for the response. I have looked it up on Mayo. It gets a bit confusing for me because TOS can cause neck, shoulder, and arm pain and the numbness/tingling in the hand and fingers which I have in varying intensity but the shoulder instability can cause all of that also. He told me that he believes at this point though that only the neuro symptoms (tingling and numbness) is from TOS whereas all the pain in the shoulder and biceps is from the instability. I think since I have been having more neck symptoms that's why he is now thinking TOS. We will talk more about it when I see him again next week. May have some x-rays taken at that time also. I'm not too worried just yet but want to know as much as possible about it. I'm keeping my fingers crossed to that I won't have to add TOS to my list of health issues. Lee
Attitude is everything.

billyf27
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Date Joined Nov 2010
Total Posts : 38
   Posted 12/29/2010 5:13 AM (GMT -6)   
I have TOS. An X-ray won't find it. Sometimes an EMG does. If you have trouble lifting your arms above your head it could be TOS. Also you need a doctor experienced in it. The surgery is risky and needs a lot of thought. I am on long term care for it which include injections. They help a lot.

There is a great message board for it

http://neurotalk.psychcentral.com/forumdisplay.php?f=24&order=desc

solar powered
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   Posted 12/29/2010 9:47 AM (GMT -6)   
Hi billy and welcome to Healing Well. Thanks much for your input on this subject. I am at the beginning of this exploration to find out what is wrong so I will keep what you said about x-rays and emg in mind. That arm is still functional but overhead activity can cause pain but is it from TOS or the unstable shoulder joint? Ahh... that is the big question.

Oh do you have more pain symptoms or more of the numbness/tingling and where do you have symptoms? I will check out that message board. Thanks, Lee
Attitude is everything.

billyf27
Regular Member


Date Joined Nov 2010
Total Posts : 38
   Posted 12/29/2010 7:43 PM (GMT -6)   
Hi Lee,

My shoulders are frozen and I can't reach above my shoulders. I also have carpal tunnel and other nerve injuries in both arms.

I have pain in front of shouldr(brachial plexus) and bicep area along with elbows, neck,and hands. But I have so many nerve injuries it is hard to tell what is from which injury.

solar powered
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Date Joined Nov 2007
Total Posts : 538
   Posted 12/29/2010 8:51 PM (GMT -6)   
Wow billy. It sounds like you have a lot going on and I am sorry to hear that. Frozen shoulder-ouch. The thought of that and how they treat that sometimes makes me cringe. Nerve pain from whatever source is just awful. Can I ask, how did you end up with so much nerve damage? Accident? Or? With all those different issues going on you do understand how it can be difficult to know what problem is causing what pain. For myself I wouldn't really care which is responsible for what except that treatment of the pain depends on the source since I can't take pain meds. Can be confusing and frustrating to say the least. Lee
Attitude is everything.

billyf27
Regular Member


Date Joined Nov 2010
Total Posts : 38
   Posted 12/30/2010 5:33 AM (GMT -6)   
The injuries came from long term use and then was diagnosed as carpal tunnel because I have that, but dr failed to check for other nerve issues.. Three surgeries failed to cure it and all the other problems followed. I have brachail plexus injury in both shoulders, herniated disc in neck, and all the other nerve injuries in arms from long term overuse, complicated by carpal tunnel surgery, also have swelling in lower back.

So many issues that fixing one could worsen others.

solar powered
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Date Joined Nov 2007
Total Posts : 538
   Posted 12/30/2010 11:24 AM (GMT -6)   
billy, I'm sorry you are dealing with so many issues. It all sounds sooo painful. You said you are on long term care, what does that entail? What type of injections do you get?

I totally understand the challenges of having multiple health issues. Myself I have several orthopedic type problems. Working with my newest doctor, I have learned that you can't change one thing in isolation. In other words, when one thing gets changed other things do too, sometimes for the better, sometimes for the worse.

Take care, Lee
Attitude is everything.

Post Edited (solar powered) : 12/30/2010 10:42:48 AM (GMT-7)


billyf27
Regular Member


Date Joined Nov 2010
Total Posts : 38
   Posted 12/30/2010 12:08 PM (GMT -6)   
I recieve injections of a numbing agent and sometimes epidurals. The doctor rotates them from lower back to shoulder every 6-7 weeks.
 
I am trying to stay away from meds as much as possible.

solar powered
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Date Joined Nov 2007
Total Posts : 538
   Posted 12/30/2010 12:40 PM (GMT -6)   
Oh, OK. Do you do any PT or specific exercises to help relieve your issues?
Attitude is everything.

billyf27
Regular Member


Date Joined Nov 2010
Total Posts : 38
   Posted 12/30/2010 5:14 PM (GMT -6)   
This has been an ongoing issue for me for years. i have braces, pt for years,a nd best of all self-hypnosis. They all help a little, but the injections are best of all.

solar powered
Veteran Member


Date Joined Nov 2007
Total Posts : 538
   Posted 12/30/2010 6:45 PM (GMT -6)   
Glad that you have found something at least that helps. Oh by the way, I have been doing some reading on that forum you mentioned. Very interesting and informative. Thanks again for letting me know about it. Lee
Attitude is everything.

purplereading
Regular Member


Date Joined Nov 2010
Total Posts : 108
   Posted 12/31/2010 12:05 AM (GMT -6)   
I had Thoracic outlet syndrome, it used to be diagnosed by having an extra rib that caused the symptoms, thus the removal of the rib. At the time, 9n th early 1980s, there was one surgeon in the US, in Colorado, that did the rib surgery. I had no intention of flying from MO to Colorado, by myself and having surgery. Besides, mine was caused by the subclavian being compressed by the growing through two muscles. I had an arm that turned black, blue, numb and cold. It was recreated by taking your arm lifting it up and takind the forearm away from you over your head, hand pointed toward the other arm. I worked in a hospital here in rural town, and knew many surgeons well, and had the surgery here. It took over 6 hours but it fixed it. they went in through a crease in my neck, and freed the subclavian and then the color changes , and temp changes, etc went away. I had mine confirmed by angiogram. the subclavian was 97% occluded. Does not sound like the same thing to me, that you describe, but there are different scenarios. rninpain

solar powered
Veteran Member


Date Joined Nov 2007
Total Posts : 538
   Posted 12/31/2010 2:13 PM (GMT -6)   
Thanks purple for letting me know your story. Glad that your surgery was successful. I think if I do have TOS mine is of the nerve compression type since I don't get the color and temp changes in my hand like you did. Until I started looking into this I didn't know that there was more than 1 type of TOS and all the different possible causes. Learning something new everyday. Lee
Attitude is everything.

billyf27
Regular Member


Date Joined Nov 2010
Total Posts : 38
   Posted 12/31/2010 3:48 PM (GMT -6)   
Mine is by nerve compression(brachial plexus), but I have very cold hands and am verys ensitive cold. Even the doctor who did EMG had to warm my hands before doing test.

solar powered
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Date Joined Nov 2007
Total Posts : 538
   Posted 12/31/2010 4:04 PM (GMT -6)   
Wow billy. My hands can be very sensitive to the cold also but it is due to the fact that I frost nipped them a few years back. Ever since then I have to be really careful with them. By the way, Happy New Year. I hope it is a good year for you. Lee
Attitude is everything.
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