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


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Old 10-02-2017, 02:51 AM #1
Looberta Looberta is offline
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Question 40+plus years of TOS

Since being a teenager, I have had problems raising my arms (shoulders it work out), or doing anything above my head. From being useless at netball at school, to blow drying my hair. My hands have always tingled and had a mottled look. After the usual tests in the UK, which all came back fine, I moved to Australia. About 20 years ago, I thought I would look into it again. Went through nerve induction tests, MRI's, etc. still no diagnosis and was sent to a neurologist who proceeded to tell me it was in my head, even though during the nerve induction test, the nurse told me I had no pulse when I raised my arms. In tears, I left the hospital and gave up again. Then 3 years ago, I started having Carpal Tunnel Symptoms and trigger finger/thumb too. I saw a plastic surgeon, who immediately jumped on the Carpal Tunnel and trigger finger (left little finger) & thumb (right) and I was operated on within 1 week for the right hand and 3 months for the left hand. The trigger on both fingers have been fine, but middle finger on right hand started triggering. I had a cortisone injection, but it still triggers. Since the operations, I can not bend my fingers of both hands in the morning, when first waking. They improve during the day, but are still very stiff and weak. My pincer grip is very bad and I cannot grip very well. On top of all this my hands and shoulders are exactly the same as they have always been. I have self diagnosed as having Neurogenic Thoracic Outlet Syndrome, which my plastic surgeon now seems to agree with. I have been seeing a great Physiotherapist, but we are getting nowhere fast, he has been trying lots of different approaches. Is there anyone on here that has the same symptoms as me. Not just TOS and/or CTS, but the hand problems since having CTS surgery? I am so over it and really don't want to enter my twilight years, already disadvantaged.
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Old 10-02-2017, 10:24 AM #2
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Does PT do any body/posture checks?
* is head /shoulders forward , hunched or rounded - that posture can compress the vascular & nerves that go thru the neck/chest junction..

ask about top rib mobilizations - it may help (mine had got stuck in a raised position and a PT professor/teacher was the one to check mine and got them dropped back into place, it was such a relief)
Then my chiropractor followed up with rib checking/adjustments after I shared that information.
A good chiropractor or bodyworker might be valuable, they might address issues differently than some PT are able to do..

Are you hypermobile? The Beighton Score for Hypermobility - EDS Wellness, Inc.

Along with the sticky threads , you can do site search for specific symptoms or concerns.. https://www.neurotalk.org/search.php
You may look for information on double or triple crush syndrome.. that is TOS plus carpal tunnel and/or cubital tunnel..
Some people do get internal scar tissue and more so after surgeries or injuries.

What is your avg pain level or discomfort level? 0- none to 10 = passing out from extreme pain
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Old 10-10-2017, 11:44 PM #3
booklover booklover is offline
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Quote:
Originally Posted by Looberta View Post


Since being a teenager, I have had problems raising my arms (shoulders it work out), or doing anything above my head. From being useless at netball at school, to blow drying my hair. My hands have always tingled and had a mottled look. After the usual tests in the UK, which all came back fine, I moved to Australia. About 20 years ago, I thought I would look into it again. Went through nerve induction tests, MRI's, etc. still no diagnosis and was sent to a neurologist who proceeded to tell me it was in my head, even though during the nerve induction test, the nurse told me I had no pulse when I raised my arms. In tears, I left the hospital and gave up again. Then 3 years ago, I started having Carpal Tunnel Symptoms and trigger finger/thumb too. I saw a plastic surgeon, who immediately jumped on the Carpal Tunnel and trigger finger (left little finger) & thumb (right) and I was operated on within 1 week for the right hand and 3 months for the left hand. The trigger on both fingers have been fine, but middle finger on right hand started triggering. I had a cortisone injection, but it still triggers. Since the operations, I can not bend my fingers of both hands in the morning, when first waking. They improve during the day, but are still very stiff and weak. My pincer grip is very bad and I cannot grip very well. On top of all this my hands and shoulders are exactly the same as they have always been. I have self diagnosed as having Neurogenic Thoracic Outlet Syndrome, which my plastic surgeon now seems to agree with. I have been seeing a great Physiotherapist, but we are getting nowhere fast, he has been trying lots of different approaches. Is there anyone on here that has the same symptoms as me. Not just TOS and/or CTS, but the hand problems since having CTS surgery? I am so over it and really don't want to enter my twilight years, already disadvantaged.
Sorry to hear of your longstanding issues Looberta, similarly I have had bilateral TOS with mottled hands trouble with any activities holding hand up, lost pulse in arm, eventually hand would go blue. Think you'll find details of my story in my history. I have had bilateral surgery-not easy to do in Australia because of lack of expertise in neurosurgeons.They will do a thorough assessment, needs to be neurosurgeon experienced in TOS. I would recommend going down this path with the best and travelling for the most experienced surgeon you can find ?Sydney. One I had was good but has since died the other I would not recommend don't know of anyone in particular in Melbourne. I had serious complications. Also the longer you leave it can cause more damage to nerve too if rubbing etc. I am similar age had one side done late 20's the other early 40s ish.

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Old 12-19-2017, 12:03 PM #4
Akash Akash is offline
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Please check if you have
- Depressed shoulders or long neck - means your upper trap is too weak to raise your arms
- Highly arched lower back - could mean you have super tight latissimus which pulls your shoulder blade down
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