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Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie. |
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09-09-2019, 11:22 AM | #1 | ||
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Junior Member
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Hi,
I spoke with my surgeon today. Surgery is due in two_three months. He says that 1/5 people do not get better. He said this is mainly because scar tissue can grow and re-compress the nerves. Does anyone know if Botox therapy would work if the scar tissue was causing the compression? I'm in two minds about the surgery as it seems like a bit of a coin flip. I don't have an extra rib so I guess its vascular TOS. Any info on the surgery would be great because the surgeon only had about ten minutes to explain it to me. Thanks, Shane |
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09-09-2019, 12:57 PM | #2 | |||
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Co-Administrator
Community Support Team
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It might be wise to ask more questions of your surgeon after exploring our TOS sticky threads..
knowledge is good.. Ask what type of TOS you have..If you aren't sure.. Nerve, Vascular ( vein or artery), or undetermined/mix .. some have pec minor syndrome in addition or as a main issue..some have unusual scalene muscles as a factor.. Vascular type is usually better outcomes, but still need a experienced surgeon, due to all the important structures in the neck areas.. Some things to consider when deciding on surgery... What is your avg daily pain level ? How much do symptoms affect your daily life? Have you had good quality /expert PT /Chiro or other therapies? Good/expert therapy can often take months or years, depending on home follow up consistency and if work or aggravating activity is continued during therapy.
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09-10-2019, 09:07 AM | #3 | ||
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Junior Member
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I've just read the report. It says NTOS. I'm having serious second thoughts about going through with this. It just seems barbaric and irreversible...
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09-15-2019, 02:22 PM | #4 | ||
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Junior Member
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09-19-2019, 03:31 AM | #5 | ||
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Junior Member
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So I decided not to go through with the surgery. Couple of reasons.
1. My body is showing a tendancy to scar usually. I have an insect bite on my shoulder that has been there for months and it has "over-scarred" into a lump. And the same thing happened on my finger from just a small biopsy I donated to TOS research. Chances are the scar tissue from the surgery will rd compress the nerves and actually make it worse. 2. Questionable diagnosis. I definitely have NTOS because the scalene block test was positive. But one clinician says the compression is caused by an abnormal muscle growth (through overuse) that has grown into the nerves, compressing them. The other clinician says the problem is the muscle under my shoulder blade becoming weak through overuse and not being able to hold my shoulder in place properly. The shoulder falls forward, compressing the nerves in the neck and down the arm. I put this to the test and bought a posture brace that pulls the shoulder back and sure enough it helps. It was absolute agony at first - the worst pain I have ever felt. And the shoulder still can't hold itself up, and after 5 years of exercise I doubt it ever will. Still going to go for Botox so I get the clearance without the brace. Apparently it can be bad to wear it every day (even though I never want to take it off again!). The Botox should allow me to hit it pretty hard at the gym and try to correct the posture. Ive seen 3 different physios and 3 orthopaedic surgeons, and a TOS specialist. Not one recommended this £40 brace. The TOS has led to problems in every joint in my right side that could have been prevented. |
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09-19-2019, 03:57 AM | #6 | ||
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Junior Member
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The issue is (in cases like mine) there is no way to prove what is causing the compression. The clinician organising the surgery was making a "best guess". Apparently the area where the nerves/arteries are was incredible small (3mm) which led him to "guess" that the area was easier to compress with an abnormal muscle growth.
But nobody could see it or prove it. The only proof was that the physio exercises didn't work and the scalene block provided relief. In my opinion the physios are far too dainty. I am a fully grown man. The stretches and flexibility exercises are great for pain management. But to strengthen muscles you need to tear them and regrow them over and over. They give me a long elastic band to do seated rows and it's just not enough resistance to actually build strength. And the surgery, in my case, should be on the upper back to pull the shoulder back down. Not cutting parts of my ribs out. Xray showed no rib abnormalities whatsoever. If you do, then yes you probably need them removed. But this cookie cutter approach just seems irresponsible, considering the risks. |
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