Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 01-24-2015, 12:03 PM #1
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Default New and questions about TOS, thanks.

Hello to all,

I’m here for info on Thoracic Outlet and I hope to get some feedback from those with personal experiences. I understand nobody can diagnose me over the internet, but I am VERY interested to see if my symptoms “closely relate”. I am a 36yo male, slender and tall with what some say is a droopy shoulder posture. I have been a runner for many years.

I have had symptoms of numbness to the right small and ring finger, on and off for a year. It is seemingly positional such as sitting position and most aggravated by sitting at the computer utilizing a mouse. About 3-4 months ago the pain started to go up my arm, affecting the wrist and causing pain along with wrist “weakness” per say. I started with a strong pain in the upper forearm closely resembling tennis elbow. I suspected radial nerve issue or ulnar nerve entrapment.

A few times particular I was riding the motorcycle on a long day trip (cruiser/touring style) when the pain became significant and all the way up my right arm in the triceps, into my shoulder, clavicle and right side of my neck. The pain seemed deep though, located right above my clavicle, under the neck muscle. This lasted for days on end after that long ride. My arm felt heavy and the pain was constant.

This sent me to a Chiro for relief of right sided neck, shoulder, and arm pain. He cracked me twice, a few days apart from each other. I got very little relief and in fact on the second time I walked out of the there with a new pain to the left neck and a few days later began to experience heaviness to the left arm. Since then (3 months now) I have developed numbness, aches, and cramps to my left hand and fingers causing dexterity issues and “perceived weakness”. All the while the right arm continued with positional pain, numbness, and aches as well. I quit riding the motorcycle and stopped all upper arm exercises and the shoulder pain subsided, but the hand and wrist symptoms continue. The arm heaviness is there at times. The finger numbness comes and goes and can be exacerbated with certain shoulder stretching. What gets me the most is the left hand wrist and fingers that ache at times and feel “stiff” or a loss of dexterity per say. Others say I have no loss of strength.

I have had a neck CT scan, MRIs of; Brain, Cervcial, Thoracic, Lumbar spine, all with contrast. EMG/NCV studies to all four limbs, blood work to include Lyme and other “stuff”. All the diagnostics are negative. No nerve entrapment etc. I was told I could take anti-depressant medication and see if this would help. I don’t feel I need that. I’m anxious because I cannot find a reason for my symptoms.

I have started with a different Chiro and also one session of PT with someone who specializes in sports and active release. The session was ok, not awesome, but I will continue.

Does this sound similar to TOS? Hand, wrist, finger numbness with aches and dexterity feelings? Pain up the arm and into my shoulder and right neck at times, almost feeling like it’s under my clavicle? Feeling like I have a pinched nerve, yet studies are normal? This is frustrating.

Thanks to those who will respond.
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Old 01-24-2015, 12:53 PM #2
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Sounds quite familiar..
Have you found our sticky threads yet, they are a good place to get a crash course on TOS and therapies. Stickies are at the upper section of the main TOS forum page -
http://neurotalk.psychcentral.com/forum24.html

Post #1 in this sticky (Our Useful Links - Websites, Articles & Polls) is a large collection of info links- great place to start..

On chiro & PTs - IMO - If they don't do a comprehensive assessment of muscles as well as bones and posture, or don't seem to listen carefully to what you are describing, I think I would excuse myself and leave that place..

If a chiro only wants to do a few adjustments only, with no muscle work I'd avoid those too.
Often we need a well rounded treatment plan for muscles & alignment..

Here are some basic things you can try at home-
http://neurotalk.psychcentral.com/album.php?albumid=422
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Old 01-24-2015, 01:08 PM #3
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Thank you for the reply. I am reading through the stickies now. Yes, the PT was very thorough and spent 45min with me, also doing muscle work and teaching various stretching for home exercises before returning again.

This whole thing is frustrating! Primarily because I feel I'm being looked at like I'm crazy because all my testing was "normal". Thus, I have no organic cause for my symptoms. I was banking on a carpal or ulnar nerve entrapment as a solid diagnosis, but no.

Glad to read through these posts and see others out there...
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Old 01-24-2015, 01:10 PM #4
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Hello and welcome! Your story is almost identical to mine. I had the exact same evolution, first hand, wrist pain, then it spread to the shoulder and left arm. I can also describe that tight sensation on the arms like a sweater with tight sleeves that was making me immobile and awkward.

Because I didn't know about TOS I went trough an unnecessary wrist surgery that obviously did not fix anything, got tested for MS and anything else under the sun.

I would recommend that you see a TOS specialist, there is no point in wasting more time and money on unnecessary treatment/opinions.

Can you tell which city you live in so that we can make a recommendation for a specialist?

I have already had surgeries on both sides and recovering.
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Old 01-24-2015, 01:26 PM #5
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Quote:
Originally Posted by Nellyzen View Post
Hello and welcome! Your story is almost identical to mine. I had the exact same evolution, first hand, wrist pain, then it spread to the shoulder and left arm. I can also describe that tight sensation on the arms like a sweater with tight sleeves that was making me immobile and awkward.

Because I didn't know about TOS I went trough an unnecessary wrist surgery that obviously did not fix anything, got tested for MS and anything else under the sun.

I would recommend that you see a TOS specialist, there is no point in wasting more time and money on unnecessary treatment/opinions.

Can you tell which city you live in so that we can make a recommendation for a specialist?

I have already had surgeries on both sides and recovering.
Charlotte NC. I'm willing to travel within reason to see the best. Thanks for the reply.
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Old 01-24-2015, 01:46 PM #6
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it looks like Dr Donahue in Boston is your best bet? Will research further and let you know
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Old 01-24-2015, 02:30 PM #7
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Dr Robert Thompson
1 Barnes Jewish Hospital Plaza
St Louis, MO 63110
http://surgerydept.wustl.edu/TOS_Meet_Staff.aspx

I thought there was someone in Maryland ? and another in one of the southern states..
http://neurotalk.psychcentral.com/thread135.html

What is your avg daily pain level? 0 none --10 + passing out from pain
5-6 interferes with sleep..

Have you had any sports injuries, hit,s falls or car accidents in the past?
What type or work do you do desk work, repetitive, lifting /reaching or static postures?
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Old 03-03-2015, 05:04 AM #8
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Default TOS recovery

Hey,

I am happy to go into more detail about my experiences if you want, but I just wanted to say that I had my 1st rib removed on the left side in December of 2012 and on the right side in August of 2014, and I have no troubling, lingering side effects.

I am able to do CrossFit workouts and Olympic Lifting 5-6 days a week, and I was not active at all - like ZERO active points - before my first surgery in 2012, so it's not strictly a result of my fitness level pre-surgery. The actual surgery is tough for a little bit, but after my second one, I was walking 2+ miles a day (VERY SLOWLY) while I was still in the hospital - the nurses kept laughing at me dragging my IV pole back and forth in the halls. I was back at CrossFit (lifting amazingly light weights) by 6 weeks or so, and now, six months later, I can do pull-ups and push-ups and lift more weight than I ever had before surgery.

I certainly understand that some people have far less positive experiences than I have had, but I can remember feeling really overwhelmed and stressed because everything I read online seemed so negative. I hope it brings you some comfort to know that not every experience is bad - I am super happy I had it done. I even have some neat scars to show off now.

Elizabeth, 29, Texas
(Left 1st rib resection, December 2012 - age 27; Right 1st rib resection August 2014, age 29)
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Old 03-03-2015, 09:34 PM #9
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Quote:
Originally Posted by Heybeth View Post
Hey,

I am happy to go into more detail about my experiences if you want, but I just wanted to say that I had my 1st rib removed on the left side in December of 2012 and on the right side in August of 2014, and I have no troubling, lingering side effects.

I am able to do CrossFit workouts and Olympic Lifting 5-6 days a week, and I was not active at all - like ZERO active points - before my first surgery in 2012, so it's not strictly a result of my fitness level pre-surgery. The actual surgery is tough for a little bit, but after my second one, I was walking 2+ miles a day (VERY SLOWLY) while I was still in the hospital - the nurses kept laughing at me dragging my IV pole back and forth in the halls. I was back at CrossFit (lifting amazingly light weights) by 6 weeks or so, and now, six months later, I can do pull-ups and push-ups and lift more weight than I ever had before surgery.

I certainly understand that some people have far less positive experiences than I have had, but I can remember feeling really overwhelmed and stressed because everything I read online seemed so negative. I hope it brings you some comfort to know that not every experience is bad - I am super happy I had it done. I even have some neat scars to show off now.

Elizabeth, 29, Texas
(Left 1st rib resection, December 2012 - age 27; Right 1st rib resection August 2014, age 29)
Hi Elizabeth - Thanks for posting! I'm wondering if you wouldn't mind providing a little more info on your case and recovery...
I"m contemplating surgery and it would be helpful to know how your case compares to my own. So, I have a few questions. Any info would be greatly appreciated...and of course, only whatever you feel comfortable sharing.

* What type of TOS did you have? nTOS, aTOS, vTOS or some combination of them?

* Do you know the cause of your TOS? mv accident? posture/repetitive work? predisposition w/ bony abnormality?

* I know you mentioned rib-removal, but can you provide more info on the procedure that was done? transaxillary? supraclavicular? partial or full scalenectomy? neurolysis? pec minor release as well?

* What were your main symptoms prior to surgery? And, what symptoms still linger post-surgery?

* Who was your surgeon? Of course, always on the look-out for surgeons w/ positive outcomes....

Sort of a lot of questions...but any info would be a great help!!
Many thanks in advance....
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Old 07-26-2015, 03:32 PM #10
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Quote:
Originally Posted by Heybeth View Post
Hey,

I am happy to go into more detail about my experiences if you want, but I just wanted to say that I had my 1st rib removed on the left side in December of 2012 and on the right side in August of 2014, and I have no troubling, lingering side effects.

I am able to do CrossFit workouts and Olympic Lifting 5-6 days a week, and I was not active at all - like ZERO active points - before my first surgery in 2012, so it's not strictly a result of my fitness level pre-surgery. The actual surgery is tough for a little bit, but after my second one, I was walking 2+ miles a day (VERY SLOWLY) while I was still in the hospital - the nurses kept laughing at me dragging my IV pole back and forth in the halls. I was back at CrossFit (lifting amazingly light weights) by 6 weeks or so, and now, six months later, I can do pull-ups and push-ups and lift more weight than I ever had before surgery.

I certainly understand that some people have far less positive experiences than I have had, but I can remember feeling really overwhelmed and stressed because everything I read online seemed so negative. I hope it brings you some comfort to know that not every experience is bad - I am super happy I had it done. I even have some neat scars to show off now.

Elizabeth, 29, Texas
(Left 1st rib resection, December 2012 - age 27; Right 1st rib resection August 2014, age 29)

This is awesome. This is the kind of stuff I never see on this site!
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