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


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Old 09-09-2019, 11:22 AM #1
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Default Does Botox Help If Surgery Fails

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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Old 09-09-2019, 12:57 PM #2
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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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Old 09-10-2019, 09:07 AM #3
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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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Old 09-15-2019, 02:22 PM #4
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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...
Let us know what you decide. I'm not convinced on the surgery either based on what I've read.
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Old 09-19-2019, 03:31 AM #5
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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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Old 09-19-2019, 03:57 AM #6
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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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Old 09-19-2019, 04:04 AM #7
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Oh and I haven't received an answer to the original question. I'm pretty sure if scar tissue was growing into the nerves then it would be pretty hard for the Botox to do its job though...
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Old 09-19-2019, 10:50 AM #8
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Many with TOS got worse with cookie cutter PT, the stretchy bands , building the wrong muscles.. Stopping repetitive /straining activities may benefit more and adding flexible movements , gentle stretching.
If all your right side is affected.. check your shoulders, hips, knees do they look level with the other side?
If uneven, you might look into nucca /upper C spine adjusting..
Some info - Up C Spine

Some with internal scarring post op tried many things for pain with little results..
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Old 09-19-2019, 12:39 PM #9
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Quote:
Originally Posted by shaney-_-m View Post
Oh and I haven't received an answer to the original question. I'm pretty sure if scar tissue was growing into the nerves then it would be pretty hard for the Botox to do its job though...

My right shoulder was droopy. It is much better now but it will get lazy at times. It is as much a strength issue as it is a neuromuscular issue. You must constantly keep it at the correct height consciously until it learns to unconsciously stay there. Meanwhile supplementing with strengthening of the upper trapezius and levator will help as well. Best of luck. In my case strengthening the neck and shoulder elevators and upward rotators has helped me tremendously.
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Old 09-20-2019, 03:40 AM #10
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It's not droopy as in I was born with it. In fact at times you can barely tell its lower than the other side. I was working at a factory and they had me on the same job for months on end. Before that, looking at my medical history, there was absolutely nothing.

The leg pain, it seems, is from the right scapula being pulled out of position by the weight of the shoulder and over stretching the muscles/nerves in the lower back.

I did have an MRI on cspine which showed nothing. But when I put on the brace, I realised the lower shoulder was making me face slightly to the left. It was really weird and disorientating to face straight in front of me for the first time in 5 years. Really messed with my balance.

Could also contribute to leg pain, having spine slightly out of position for so long. I would like to see a chiropractor, just to have my posture analysed.

And thank you for the inspiration. I've had so many clinicians tell me it will be permanent so I'm not too optimistic it will be cured. "Able to cope" is what I'm aiming for...

Were you born with your droopy shoulder?
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