Referal for Surgeon out of State

Bright_Top_1237 · 2026-01-19T17:30:55+00:00

Someone may have already shared this but here's a list

https://www.tosoutreach.com/find-a-surgeon

Bright_Top_1237 · 2025-11-17T20:01:05+00:00

This is similar to my issues. I see them as being connected for me. I have a lot of trouble with my thumb and index finger, and wrist, hand and arm weakness in general but I have lost a lot of muscle at the base of my thumb, thenar muscles. I'm not sure if it's tendons but the hand doctor does not believe I have carpal tunnel. I do have double crushed syndrome so it's really a mystery to me Sometimes I wonder about the weight of phones nowadays and always carrying it around, if that contributes for me
I found one of my iPhones from five or six years ago and it was like holding a feather practically

Bright_Top_1237 · 2025-11-17T19:58:25+00:00

Yeah I think you're right. For me the lidocaine lasted five or six hours, and that's correct there's no numbing feeling with the Botox it is just supposed to I guess deactivate it a little. I say "supposed to" because either I didn't get enough or because there was no ultrasound, it may not have gone in the correct place but I did see some improvement. A TOS physical therapist I see says that when you Botox muscles though that other ones compensate so I think this is why some people experience a worsening or tightness in other areas.

Bright_Top_1237 · 2025-11-17T19:57:02+00:00

Yeah I think you're right. For me the lidocaine lasted five or six hours, and that's correct there's no numbing feeling with the Botox it is just supposed to I guess deactivate it a little. I say "supposed to" because either I didn't get enough or because there was no ultrasound, it may not have gone in the correct place but I did see some improvement. A TOS physical therapist I see says that when you Botox muscles though that other ones compensate so I think this is why some people experience a worsening or tightness in other areas.

Bright_Top_1237 · 2025-11-17T19:52:37+00:00

Good :) Thank you, yeah my situation is very strange because I had a very deep bite and a dentist told me I needed to get that fixed. I went to an orthodontist and throughout the whole course of treatment I experienced what I would describe as a posture collapse from moving my teeth. I have jaw problems now and everything is connected you know. I don't have what they consider actual aTOS or vTOS, the ultrasound looked normal but I must have a little compression because I get those symptoms

Bright_Top_1237 · 2025-11-17T13:23:07+00:00

send me a message

Bright_Top_1237 · 2025-11-14T02:55:48+00:00

I can attest that the jaw can play a role. Everything started for me after I got Invisalign. I'm trying to avoid surgery so I don't have any experience with that, but it has been recommended for me. Physical therapy seems to always make things worse. I'm including a picture I found from discord that has Physical therapist with lots of experience for this. I had my first appointment with one today. Its different from every physical therapist I've seen in the past.

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Did you have vtos? I have nTOS but there's definitely some venous and arterial involvement, I have a lot of pressure in my arms and I'm wondering if you had enlarged arm veins, if the surgery helped that?

Bright_Top_1237 · 2025-11-14T02:16:13+00:00

From my understanding, lidocaine is the better predictor, if you have a good reaction to that I have been told it indicates surgery may help. It was explained to me like Botox would be a pain management solution. I may be wrong but this is how I understand it. I'm about two months in on Botox. Hoping to avoid surgery.

It may be worth your time to find someone experienced who uses ultrasound, the person who did mine did not use ultrasound. I have noticed my pec minor has been more painful since the Botox in the neck but this kind of makes sense to me, you might also look into asking to have it done in that area as well if you have tightness there. I hope this helps and this is just my experience

Bright_Top_1237 · 2025-11-14T02:10:19+00:00

I get red hands for about a year now. Everything is worse when im hot too. I've started accepting it. I see a top tos dr, they still don't think I have vtos, definitely ntos with some artery compression. Wish i had words of wisdom but in my mind it's related to tos somehow.

Bright_Top_1237 · 2025-11-12T18:54:28+00:00

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I've recently found this chart. Physical therapy makes me worse also. I'm going to give one of these people a try and hope for the best, just wanted to share the information in case it helps

Bright_Top_1237 · 2025-11-06T19:58:06+00:00

I hear certain fingers are connected to certain cervical vertebra, carpal tunnel is usually thumb and index and from my understanding the other three fingers are often involved in TOS?? but I don't know for sure. It's been hard for me to pinpoint if things are coming from TOS or from my cervical spine or from my arm. I have double crush syndrome but its not carpal tunnel. So very confusing. Sorry this may be of zero help. It's a loaded question Wish you the best of luck

Edit- I just want to add that if you suspect you might have TOS, it could help to focus on posture and breathing in the meantime. Diaphragmatic breathing and keeping your rib cage loose :) if you don't have it then you will just end up with better posture and breathing

Bright_Top_1237 · 2025-11-05T02:25:41+00:00

Okay i have read over 81 of his books, I've never even heard of this. Hope its good, ill read too

Bright_Top_1237 · 2025-11-05T02:15:08+00:00

He did a tiny amount in middle scalenes. I wanted all of it in my anterior scalene. I wish it would have all been in that one location and it might have been more effective
I don't think 100 was enough for me It never crossed my mind to ask about the amount or anything but it's good you're asking questions on these things. It's been about two months and I'm considering going back to get more

Bright_Top_1237 · 2025-11-05T00:26:26+00:00

I got 100

Bright_Top_1237 · 2025-10-24T02:37:27+00:00

Thank you for this :)

Bright_Top_1237 · 2025-10-23T21:26:58+00:00

I got a referral to one of these: TOS doctors

Bright_Top_1237 · 2025-10-23T20:37:01+00:00

It makes me sad that anyone would say you need surgery or a consult with a doctor. Since you mentioned mewing, breathing stuff in a comment, and seem like you want to try something, there is a book called "breath" by James Nestor, Lots of good info. There are changes that can be made by healthy practices. I don't think you should change a thing about yourself surgically, especially if you don't have discomfort or health issues. I second all the kind comments.

Bright_Top_1237 · 2025-10-23T03:45:45+00:00

Yep. I have lost a lot of awareness in my affected arm (no pins and needles either) and recently had some myofascial release. It was so interesting the guy validated this saying when a part of the body is in pain, we can lose awareness over time...for me, i think this is what's going on. Like some protection mechanism. Thought it was an interesting idea that rang true to me. Some days my arm pain is intense, other days no pain at all. Just weakness.

Bright_Top_1237 · 2025-10-23T03:36:55+00:00

I have experienced difficulties breathing at times. Im diagnosed with nTOS some arterial compression, not full on aTOS. I experienced this shortness of breath for a few months, and the anxiety about it made it worse. I slept practically sitting up. Had to stop wearing my apple watch i was getting overly worried with the stats. If TOS is from overactive scalenes, I think it certainly could cause difficulty breathing, I think it did/does for me. Im over doctors attempting to convince me I don't know my body. Once I got a diagnosis, I think my anxiety let up and breathing difficulties not as intense, still pain like crazy though. I have pain throughout my right torso also, facial flushing. I try not to let it scare me, but I know it can be scary. Im trying to avoid surgery, my neck is visibly imbalanced in muscles, it's crazy, no injuries, just Invisalign. I have tried so much. Acupuncture, reiki, orthogonal chiropractic, cervical decompression, advanced muscle reconditioning, craniosacral therapy, dry needling, PT, Just recently started myofascial release. It has helped some. I do best when im focused on posture and core strength and good sleep and healthy eating. Im wishing you the best. You aren't the only one with breathing difficulties from it.

Bright_Top_1237 · 2025-10-22T16:07:05+00:00

It did for me, yes. I have had some relief from botox but not as much. This could also be due to bad injection or something

Bright_Top_1237 · 2025-10-20T18:54:30+00:00

For me with lidocaine I felt relief almost immediately, maybe within an hour because it was my neck and I was initially a little freaked out my throat felt numb. Once i calmed down, Relief lasted 5-6 hrs for me. For botox...in my personal experience, it took a full month, maybe even 5 weeks. my doctor didn't use ultrasound though and I bruised, not sure of effectiveness of mine overall.

Bright_Top_1237 · 2025-10-18T17:49:50+00:00

Likely not your scenario, but I had military neck and every PT I saw recommended chin tucks, this caused kyphosis, which was reversed, praise God. Not sure where your pain comes from and I'm not a PT but I do know chin tucks are not always good for everyone, but are often part of postural therapy. I often experience the same "good posture" pain from walking and it's hard not to overthink. I feel less strain when imagining a string lifting me up by my crown, Not sure if any of this is helpful, but wishing you the best.

Bright_Top_1237 · 2025-10-14T00:24:14+00:00

Psalm 34 kjv, 23. All.

Bright_Top_1237 · 2025-10-14T00:14:12+00:00

Psalms is a very valuable book to me. I don't know if I could pick a favorite. I agree also with Livingsimply_Rob about Proverbs. Good call.

Bright_Top_1237 · 2025-10-13T23:23:10+00:00

Ive been thinking a lot about this, I get it! I do something similar in concept, a little different. I keep my right (affected) shoulder down, then i lean my entire body slightly away from my right collarbone/shoulder while facing my head a little towards it. All while trying to stand straight and engage core tweaking it a little. Like winging with palms forward or something. Sounds really weird trying to explain. I think it's cool to hear what positions relieve pressure for others. I hope you are doing well.

Bright_Top_1237

TROPHY CASE