Thoracic outlet syndrome

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puppylover
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   Posted 4/7/2009 9:00 PM (GMT -7)   
I wondered if anyone was diagnosed with thoracic outlet syndrome.  I had surgery for this in the 80's.  Was tested for many things at the same time Ra, etc.  Numbness in arm-hand and chest pain were some of the symptoms.  I've never heard of anyone else having this.  It did help me as I could not even start my car with my right hand which was the one affected.  Just curious.
 
Puppylover
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Marlee2
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   Posted 4/8/2009 7:35 AM (GMT -7)   
I was dxd with it way before fibro. I went to physical therapy for awhile but no one mentioned surgery for it. My left hand goes numb in certain positions and I can't sleep on my right side unless I put my left arm straight down my body. Fibro is worse in my left shoulder and I don't know if it has anything to do with the thoracic outlet syndrome or not.
 
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Grailhunter
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Date Joined Nov 2008
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   Posted 4/8/2009 8:13 AM (GMT -7)   
They call it Thoracic Outlet Syndrome but its the inlet that is having the problem. They used to do surgery for it allot, but it wasn't very effective in most cases because the nerve entrapment's weren't at the spine, they were usually somewhere between the neck and shoulder muscles, the surgery often did more harm then good. Once they figured that out, a whole lot of messed up surgery's latter, they went to physical therapy exercises if it takes 6 months to a year or more to fix the problem. That doesn't mean it would take that long to get some relief.

Now they focus on stretching exercise to get the neck and shoulders backward and get the pressure off the trapped nerves. They are very simple exercises, stretching the scalene muscles in the neck several times a day, standing in a doorway with your forearms braced against each side of the door and slowly leaning forward where its pushing the shoulders back and holding the stretch for a minute or better.

They find most people with this problem have computer posture, where their shoulders and head have been leaning forward for many years.

The exercises for Thoracic Outlet Syndrome seem to work pretty good, but it takes a long time to retrain the head and shoulder posture backward where it belongs.

Search Thoracic Outlet Syndrome Physical Therapy and you will probably find a Physical Therapy website showing these stretches.

Note: This is not medical advice or directed to you personally. It is simply what I have found out about this syndrome and what they currently do to treat it.
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puppylover
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   Posted 4/8/2009 3:18 PM (GMT -7)   

Thanks, I'll look for the stretches online.  My surgery included taking a rib out.  I have a pin in my chest area and I'm sure scar tisssue that adds to my pain in shoulder area.  I think the surgery helped somewhat because I could use my hand and arm again. But after that surgery I started going to chiropractors.  Medical doctors did not believe in them back in the 70's and 80's I don't think.  My medical doctor now says he thinks they help sometimes.

 

Puppylover


Fibromyalgia, arthritis in spine and hips, IBS, Raynaud's syndrome, hypertension
 
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graceful1
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Date Joined Dec 2008
Total Posts : 20
   Posted 4/8/2009 5:27 PM (GMT -7)   
My doc thought I had it but another disagreed.  My hand turned blue in certain positions and my pulse would groww very week.  I  was having severe back spasms that he though may be causing muscles that wrapped around some nerves and blood vessels toconstrict.  Was the first time I heard of it.  It lasted for months. but once the spasms calmed my hands stopped turning blue.  Just one of the many bizarre things that happen to me!

puppylover
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   Posted 4/8/2009 6:10 PM (GMT -7)   

Yes, blue hand, weak pulse on that arm and very weak arm and hand.  Had it all.  We do get some weird stuff I think.  I'm thinking some of those stretches for people with T.O.S. will help me with some of the neck and shoulder pains I have now.  I do a few things now to try to keep my shoulders back and not hunched up to my head.  Maybe no stress would help. tongue

Puppylover


Fibromyalgia, arthritis in spine and hips, IBS, Raynaud's syndrome, hypertension
 
On the eighth day God created Golden Retrievers.


nurse2
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Date Joined Jul 2005
Total Posts : 229
   Posted 4/9/2009 7:20 PM (GMT -7)   

Puppylover,

I have the same thing but mine stems from having a horrible spine. I've had 4 cervical disc surgeries and have my second plate in my neck now. I have chronic chest pain from it and have to have a stree test and echo every 2 years because of it. The chest pain will almost cause me to drop to my knees but knowing that it isn't a cardiac condition doesn't really help when it is happening. We can get some weird stuff, can't we?

Nurse2

 

 


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puppylover
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Date Joined Feb 2009
Total Posts : 821
   Posted 4/9/2009 8:08 PM (GMT -7)   

Nurse 2,

Interesting that you mentioned the drop to your knees thing. Before I had the surgery in the 80's I would get this thing that would happen where I would immediately lay down.  Probably it was a spasm or tachycardia.  I would get a pounding in my chest that scared me to death.  Since I have mitral valve prolapse I always thought it had something to do with it.  After I had the surgery it never  happened again.  WEIRD!  I think all of my fibro symptoms started around this time-maybe a few years before.  What survivors we all are. wink

Puppylover


Fibromyalgia, arthritis in spine and hips, IBS, Raynaud's syndrome, hypertension
 
On the eighth day God created Golden Retrievers.


sore42long
Regular Member


Date Joined Apr 2011
Total Posts : 235
   Posted 4/13/2011 1:01 PM (GMT -7)   
puppylover ,its great how animals can distract your pain also sense when your not feeling well !golden retreivers are so sweet wink Ihave a dr appoint today ,soon getting surgery for thoracic outlet ,the pain meds help but every day iam still in pain ,so I  cant wait ,I probley should incress my pain meds but hate the way i feel on them.just wanted to say hi and your lucky to have such a nice dog

sore42long
Regular Member


Date Joined Apr 2011
Total Posts : 235
   Posted 4/13/2011 8:29 PM (GMT -7)   
yes thoracic outlet is nasty ,Iam getting my rib taken out which Iam told is a80%chance of working :-) compaired to last year it is so much more painful ,blue hand shooting sharp pains down arm into hand and shoulder coldness of hand ,pain meds dont stop the pain ,but make the pain milder,mind you Iprobley should take more ,but Ihate how they make me feel so groggy redface ,somedays I cant do much at all such as file nails,Istopped wearing makeup ect.the 1st signs was weakness dropping stuff,the MRI showed fluid in bursa before this Ihad cortizon shots in neck ,it worked abit ,later one in elbow ,didn't work and was so painful couldnt move arm till thenext day.Iwould say its a kill joy !my life changed from an active outgoing person to someone who dreads doing stuff has Inever know when the pain,crap will happen and driving my car is out ,only if Ihave to and only afew blocks ,no freeway drives.Isometimes wonder if its the pain meds which have caused me to be a intervert /couch potatoe or the pain its self?I do know Iwant my old self back and surgery seems my only answer.Iam glad Ifound this site has knowone seems to understand ,Isay the would ouch  so many times a day ,its silly scool I'm not sure but have read some people dont have as much pain?Some times Iwish Icould cut my arm off,so to speak !LYRICA works for some .Ihave had trouble finding much info on thoracic outlet syndrom but found on youtube agreat story/surgery recovery,2part segment from a honest realistic lady ,so nice of her to document it .take care

Lookingforasolution
New Member


Date Joined May 2011
Total Posts : 1
   Posted 5/23/2011 7:32 AM (GMT -7)   
I can relate to the stories here. Thank you for sharing. I hope that my story will help someone.

I was diagnosed with TOS nine months ago, and never did I imagine it would take this long to recover. I figured I would find the solution, work it hard, and I would be better in a couple of months, yet I am still struggling with this problem, though it has improved since I was diagnosed last August. I am confident I will get back to normal eventually. Doctors have assured me it takes a long time to recover, to be patient.

I was a daily newspaper reporter for nearly 12 years, and my body began exhibiting signs of TOS during my last months at the paper, but it was nothing major. Some wrist pain. However, I left the business to pursue other interests and took a few months off, with little keyboard use, and it went away. When I began freelance reporting again last summer, it came back with a vengeance and overnight, with burning pain radiating down my arms and into my hands. My fingertips were numb. It hurt to even lay a finger on the keyboard.

An orthopedic surgeon diagnosed me -- all my years of hunching over the keyboard, stressed out on deadline, had caught up to me (I had developed forward neck, meaning the natural curve was gone) -- and recommended physical therapy and massage therapy. I eagerly made appointments for both. I went to two physical therapy sessions, and scoured the Internet for information about TOS, of which I had never heard before. I took copious notes and developed my own little recovery plan based on suggested exercises. I'm glad that I did because the physical therapists at the place my insurance covered were absolutely overwhelmed, and I was one of three or four other people they were juggling at the same time. They were of little help, and on my third visit, the therapist told me that, based on my personal plan, it seemed as though I was doing everything I could do and there wasn't anything else they could do to help me. So I left.

But, the pain didn't go away. I had good days, and then it was back, which was really frustrating. Before TOS, I worked out five days a week, including lifting weights. I hiked and kayaked. I couldn't do any of that anymore, and pain, combined with frustration about my limitations, had a significant impact on my emotional well-being, making me depressed and/or agitated toward everyone, depending on how bad a day it was.

I took a job that required me to do a lot of computer work and reading/editing, which required me to look down a lot, which aggravated my neck. I spent the following months looking for what I hoped would be quick fixes, while continuing massage therapy, which provided temporary relief and allowed me to continue working. I went to a chiropractor/acupuncturist, but the treatment was going to cost $1,600 AFTER insurance coverage. I couldn't bring myself to do that before trying less-expensive solutions. I saw a yoga therapist who specialized in TOS, and he developed a gentle routine for me, but I didn't dedicate myself to it because of long workdays. Then I decided perhaps I needed meditation to help me loosen my shoulder muscles so they wouldn't press on the nerve bundle. In short, I was on a merry-go-round of potential solutions and becoming increasingly desperate.

Here is what has worked for me up to this point: Yoga and the good posture and breathing that it promotes. On days when I am conscious of my posture and breathing from the time I wake up, I have very little to no pain. The book that has helped me is "Healing Yoga for Neck and Shoulder Pain" by Carol Krucoff. It describes TOS well and provides a list of exercises meant to provide relief. I go to a yoga studio once a week to ensure I am doing the poses correctly.

If I had to point out one thing that helped the most, it would be breathing properly, through my diaphragm, instead of breathing shallow and letting my upper body do all the work. It took me a while to learn how to breath through my diaphragm, and I place a small sandbag (the kind used at yoga studios) over it to help me focus in that area. When I breath through my diaphragm, it gives my upper body a rest, which allows the muscles in my neck and shoulder to relax. That, in combination with good posture (chest out and up and shoulder back -- mountain pose is great for this), allow me those good, pain-free days. Also, a good night's sleep is crucial. When I don't sleep well or get little sleep, my body is tired and doesn't want to cooperate.

I have finally accepted that there is no quick fix to this problem...not that acceptance makes me want to scream in frustration any less. I still have mild to moderate neck and chest pain most days, and my nerves bother me at night, but I do think some of that may be psychological: I am afraid of the pain, so I trigger the pain. I have to keep trying.

Best of luck to each of you in your recovery!

sore42long
Regular Member


Date Joined Apr 2011
Total Posts : 235
   Posted 5/26/2011 9:37 PM (GMT -7)   
HI,Lookingforasolution Iwas so ecited to see apost Iam going thur samestuff ! for 2 yrs of going to every test and different doctors ?To find Tos and unable to live a life everytime i move my arm it hurts ,pain meds that do not work.I tell you has been astrugle .Ijust had a dr appointment and to my dismay ,the surgeon now wants to send me to another doc?Iam having trouble accepting ,Iam going have to learn to cope with the pain for longer,thanks for the exercise ideas

Find a Cure 4 Me
New Member


Date Joined Dec 2012
Total Posts : 2
   Posted 12/18/2012 10:01 AM (GMT -7)   
Hi Lookingforasolution. Thank you for your post. My TOS resulted from an injury and it was actually my physical therapist who discovered it. I had to suggest it to my doctor, who then checked it and ordered all the tests. My doctor couldn't figure out why I was experiencing so much pain so I'm thankful for such a great PT. My TOS stemmed from a neck injury a few years back and after finally having everything confirmed I've committed myself to daily stretching to help alleviate the problem. I only want to do surgery as a last resort. My PT set me up with a foam roll that I lay on lengthwise and put my arms out to the side. It's a Great Stretch and it really helps open up the chest area. I am also suffering from Fibromyalgia. The Fibro specialist I see says he does have a lot of patients with TOS as well.... Is there a connection? I don't know.

Thanks for the recommendation on the book, I'm going to pick up a copy. I had to quit doing yoga due to cost and the last session I had of Gentle Yoga left me in pain for a week! I'm going to start slow again. I've also cut out inflammatory foods and that helps with staying slim too! Last but not least, meditation. I'm hoping that a daily routine of all the above will help get me back to feeling good and managing my TOS and Fibro symptoms.

Also, to anyone out there who is seeing doctors over and over... Take charge of your health, start eating healthy, get off the meds, do some form of yoga, stretching, etc daily and try to keep a positive mind. I spent a year on pain meds and muscle relaxants and I will never go back there again. Start slow, but find the strength.

Cheri2mato
New Member


Date Joined Feb 2013
Total Posts : 2
   Posted 2/5/2014 10:16 PM (GMT -7)   
Hi,

I am a female in my late 20's and I developed thoracic outlet syndrome -TOS- 3 years ago. I got it from doing just a couple months worth of repetitive computer desk work; I tend to carry a lot of anxiety and didn't even realize how much stress I was putting my body under. I have been told that it's fairly common for younger women who tend to carry a lot of tension especially to develop TOS.

My neurologist, Dr. Tracy A. Newkirk in Greenbrae, CA and my physical therapist Steve Talajowski at Physiotherapy Associates in Hayward, CA diagnosed me based on my symptoms. They have seen many many people with similar symptoms to those that I was experiencing: tenderness, weakness, tingling, and needle – like pain throughout my neck, chest, shoulders, arms, and hands. The TOS was confirmed by a special MRI/MRA developed by Dr. Scott Werden, which gave me a lot of peace of mind once it was confirmed. This is a special kind of MRI that most hospitals do not offer. (Go to: http://www.tosmri.com/ for more info.)

Dr. Peter Edgelow is a wonderful man who spent a lot of time researching the best physical therapy to heal the injury; the Edgelow Protocol for healing TOS involves a lot of gentle, deep breathing exercises and walking a special way to get good blood flowing again. (Physiotherapy Associates in Hayward, CA #: (510) 732-7881)
I am on track to do the PT. I trust it will work. A good friend of mine did it, WAS COMMITTED AND FOLLOWED DIRECTIONS, and now she is all better!

Other options are a $2,000 vest that you can get that was created by Dr. Tracy Newkirk, or worst case scenario, surgery by Dr. James Avery in San Francisco. (His office # is (415) 600-1386.)

Hope that helps someone!

P.S. I have horrible IBS -- food won't digest well. Could the TOS be contributing to this??

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