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Old 01-18-2006, 05:42 AM   #1
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Question Anyone with TOS?...thoracic outlet syndrome

I didn't know where to post this one because there isn't a shoulder forum but it is Neurological in nature. I have an left arm ulnar neuropathy. ...but I've been having shoulder pain for years. I just got the ulnar neuropathy diagnosis in May of 04. I do have degenerative joint disease in both shoulders, Acromioclavicular OA in the left one, as well as bursitis and tendenitis. I also have some DDD in my neck with nerve degeneration at my C-6/7 level with axonal neuropathy. This still doesn't explain the cold hands and arms that I get all the time. They are cold from the elbow down. Then there are times when my whole left arm is cold. It's like a deep in the bone type of cold. My pinky on my right hand will also get numb at times. My hands always tingle when they get cold and sometimes they burn. I've brought this up for the past three years or longer. I've just been told it's my Fibromyalgia.
I KNOW it's NOT!!! I'm not a doctor but I'm also not an idiot. From what I've been researching they say this is one of the s&s of arterial TOS. It also talks about the scalenes and the 1st rib. I remember my PT telling me when I came in for my shoulder that my scalenes were always tight and didn't tolerate PT very well. He was always adjusting my first rib as well. Also, from what I was reading, they say that TOS can start as an Ulnar Neuropathy but the main culprit is trapped or inpenged nerves in the clavicle, rib or scalene area.
Anyone else have Thoracic Outlet Syndrome?

 
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Old 01-30-2006, 06:40 PM   #2
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Tight Socks HB User
Re: Anyone with TOS?...thoracic outlet syndrome

Have the doctor take your blood pressure in both arms. If different, this may signify blockage. That's how they caught my problem. I had had years of pain in my right arm whenever I would lift it. They did a simple quick operation and cut away the muscle that was trapping the blood vessles and nerves against the clavicle. No problems whatsoever since then. Look into it. Good luck.

 
Old 01-30-2006, 06:47 PM   #3
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Re: Anyone with TOS?...thoracic outlet syndrome

Thanks. I believe they have done that when I went to the Vascular Surg. I will ask them to look into it again. I just can't shake the feeling they are missing something because my arms and hands are cold A LOT!!! I mean to the bone!

 
Old 02-07-2006, 03:24 PM   #4
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abcwangfoo HB User
Smile Re: Anyone with TOS?...thoracic outlet syndrome

Hi,I was told I have TOS,last yr.My left fingers,mostly pinky,go numb.The Dr. xrayed my neck,said I was born with extra rib in neck(TOS).My left fingertips burn&get painful when,cold.I,had EMG(nerve test,said Ulnar neuropathy.I,thought,it was MS.Had,brain MRI,it was normal. Dr.didnt help,much with,my problem.I reallty don't want surgury.Iam a cleaning lady&I work with my hands alot.Must be the reason for Ulnar problem.Sorry,I can't help.

 
Old 02-17-2007, 09:14 PM   #5
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HyperactiveGirl HB User
Re: Anyone with TOS?...thoracic outlet syndrome

Quote:
Originally Posted by Tight Socks View Post
Have the doctor take your blood pressure in both arms. If different, this may signify blockage. That's how they caught my problem. I had had years of pain in my right arm whenever I would lift it. They did a simple quick operation and cut away the muscle that was trapping the blood vessles and nerves against the clavicle. No problems whatsoever since then. Look into it. Good luck.
What type of doctor did you see that was able to get you set up with treatment and surgery? I was seeing a spinal orthopedic specialist, and now he is sending me to a nerve specialist to do some tests. But what would be the best type of specialist that I should see for this that would get me the right path of treatment? Thanks for your help.

 
Old 02-20-2007, 06:37 AM   #6
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bass2bone HB User
Re: Anyone with TOS?...thoracic outlet syndrome

Quote:
Originally Posted by zephyrqueen View Post
I didn't know where to post this one because there isn't a shoulder forum but it is Neurological in nature. I have an left arm ulnar neuropathy. ...but I've been having shoulder pain for years. I just got the ulnar neuropathy diagnosis in May of 04. I do have degenerative joint disease in both shoulders, Acromioclavicular OA in the left one, as well as bursitis and tendenitis. I also have some DDD in my neck with nerve degeneration at my C-6/7 level with axonal neuropathy. This still doesn't explain the cold hands and arms that I get all the time. They are cold from the elbow down. Then there are times when my whole left arm is cold. It's like a deep in the bone type of cold. My pinky on my right hand will also get numb at times. My hands always tingle when they get cold and sometimes they burn. I've brought this up for the past three years or longer. I've just been told it's my Fibromyalgia.
I KNOW it's NOT!!! I'm not a doctor but I'm also not an idiot. From what I've been researching they say this is one of the s&s of arterial TOS. It also talks about the scalenes and the 1st rib. I remember my PT telling me when I came in for my shoulder that my scalenes were always tight and didn't tolerate PT very well. He was always adjusting my first rib as well. Also, from what I was reading, they say that TOS can start as an Ulnar Neuropathy but the main culprit is trapped or inpenged nerves in the clavicle, rib or scalene area.
Anyone else have Thoracic Outlet Syndrome?
Have finally been confirmed with TOS after 5 years of tests and Physio to no avail. Have fractured C3 twice in the early 70's but nothing serious. After checking websites and message boards came to the same conclusion that this subject is not very common. Physio helped for a short period but now suffering worst pain than before.

Had all the tests like blood/ oxygen/pressure and apart from Osteoarthritis evrything checked out normal. Awaiting the possibility of an operation to rmove a rib either side of spine to relieve the pressure.

Would this be a common factor in the cure?

 
Old 12-21-2007, 09:12 AM   #7
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payton HB User
Re: Anyone with TOS?...thoracic outlet syndrome

have any of you heard of elevations in blood pressure in chronic TOS due to the compression of the vagal nerve. incase you are not pruvy to the vagal nerve situation - it is a cranial nerve that passes through the medial scalenes and anterior scalenes (which are major components of TOS) on its way to innervating the diaphragm, heart, GI, and other anatomical structure. it plays a major role in heart rate and BP. well i have had severe TOS for the last couple of years and about a year ago my BP has gotten pretty high at times, just curious.
-Thanks ahead of time

 
Old 04-12-2008, 02:39 AM   #8
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Re: Anyone with TOS?...thoracic outlet syndrome

Hi just joined the message board. I just had thoracic outlet surgery, my Dr. removed my right top rib and my scalene (I beleive?) muscle. I also had and still have cold in my right arm, but this surgery was only a week ago so I am going to give healing some time. But the little twist was just 2 days ago I saw a neurologist to further treatment on my injury to my arm and neck and was told I also had Chiari Malformation it can cause alot of the same symptoms. Look into it. I was told if the Dr isn't looking for it, they generally overlook it. My diagnosis passed thru 3 very competant and reliable Dr's I owe a great deal to. I was only diagnosed with chiari's by my new neurologist, Thoracic outlet by a vascular Dr, and a bad rotator by by orthopedic dr. Keep looking I still am too.... well thoughts your way. PS I am a fairly young individual for this (Under 40) so it can happen anytime in your life. I was told once I was to young for these problems. Who accually says that anymore

 
Old 05-20-2008, 07:18 AM   #9
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Re: Anyone with TOS?...thoracic outlet syndrome

Hello,
I had no idea what TOS was until I woke up in Nov. with a subclavian clot in my left vein. This process took just about 6 months from start to finish. My family Dr. was most of the poblem. I went to an Urgent Care and they said I had a clot, then they sent me to the hospital to where they did an ultrasound and that said I didn't. I saw my family Dr. the next day and she said it was flabitis. I understand now that can only be determined by a blood test which she did not perform. I was told she would see me in two weeks. Went back in two weeks and things were not better. She sent my for a cat scan and then was told to go in for a venogram the next day. That is when they found the clot in my vein. She then sent my to a Cardiothorasic and he wanted to know my blood level for my cuminin, it still was to high and he wanted to admit me to get my blood thin enough. I sat out in the hositals parking lot for an half an hour because my Dr. would not admit me so the Cardiothoracic did. I was in the hospital for 4 days, then my Dr. discahrged me without the Cardiotroacic even knowing about this. She had no idea where to send me and in January of 2008, that is when I first learned about TOS. The Cardiothoracic was unable to do anything and sent me back to my family Dr. So then she didn't know where to send me and call OSU which then sent me to another Cardiothoracic which wasted a month of my time. I tryed to find out from that office if it should be them or a vascular I really needed to see, they never got back with me so I went to see them, in return they sent me to a vascular which took another week and a half to get in to see them. I finally got to the right place only for them to tell me it was to late to save my vein. Every place I went, it always would end in "See you in month". I got soooo tired of hearing that. If I would know now what I didn't know then, it would of been alot different outcome I think. I went back in a month to see the vascular and he set up the surgury to remove my rib axillary. Well on April 8, 2008 the surgery happened only for them to stop because I was to muscular for him to safely remove the rib, so the surgury was aborted. I was not to happy and went to see another vascular in Cincinatti. He was great and explained the whole process for the surgury. That group thought they might beable to get through the vein. We prayed about this and I chose to keep the appointment with OSU. Dr. Vaccaro had been on the books with the medical board since 1976 and how many Dr's do you know that would know and admit their limitations? I went back in for the second attempt on April 28th 2008 and they took the rib and the scalene mucsle. It has now been three weeks since surgury and so far it has gone great. They do do TOS surgury in Columbus Ohio. I would highly recommend Dr. Vaccaro for this surgury any day of the week. Thanks!

 
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