r/thoracicoutletsupport

Hello, all! Seeking your experience to ask if I should go through with an optional CTA scan. Was lucky to meet with Dr. Donahue last month after nearly a year wait, and I am lucky that PT and a neck injection have made me largely pain free in daily life (pain/lack of blood flow while sleeping and exercising are still a work in progress). I still have constant tingling in the pinky finger of one hand for over a year now, but only slightly reduced grip. Compression is likely muscular, no cervical rib suspected.

Should I go through with the CT scan? He offered it if I wanted it, but suspects all findings will be normal, and not sure I need extra radiation now that I’m in a lot less pain than I was a year ago. Kinda thinking I should wait until things flare up again to go through with the scan, and appreciate your opinions!

Hey guys, so am writing this to update y’all.
I am doing much better now..even though i redeveloped my vascular TOS, I am well managed on blood thinners and pain medication ( which i usually take maybe 2-3 times a month).
My arm is still discoloured and a lot of things in my daily life needed to be adjusted initially. On my recent most check up I got the green signal to join my gym back as well.

Wanted to write this for the people who are in the middle of diagnosis, deciding to go through surgery or recovering.
You will definitely have to adjust some things around your life…a lot of times no one can completely go back to their old life, but it gets better!

Feel free to ask anything :)

Hello,

14 weeks ago I had removal of my anterior scalene and first rib along with removal of 5cm fibrosis band on my inferior nerve trunk (this controls the sensation in the hands). After surgery I felt great. Literally all my symptoms (pain in fingers, occipital heads aches, cold sensation in hand, and muffled grip strength) were resolved. My protocol was to not lift anything over head for two weeks and I was prohibited from lifting more than 15lbs for four weeks. I did some PT after surgery however because I have nTOS compression on my left side so I had to stop PT and schedule my left surgical decompression. I would still occasionally do unilateral PT exercises at home to strengthen my operated side. At 12 weeks out I did some yard work which consisted of moving 24 17lb cement pavers (one at a time) and shoveling/raking mud to flatten the area in which the pavers would be placed. The following day almost all of my symptoms in my hand and arm have returned to the way it was pre op with mild occipital twinges of pain at times. It has been two weeks since the event and I am still in discomfort. I have a history of over developing scar tissue and chronic shoulder instability on the same side as the operation.
Will this calm down on its own? Has anyone else experienced this?

Please let me know what you guys think,

-Charlie

Hello All,

Completely frustrated but finally feel like I can see the other side for once. 10 years ago i had a gym injury where i heard a popping noise and was not able to turn my neck or even get out of bed for 3 days. After i experienced significant neck pain along with numbness and tingling in my left plam, ring and pinky finger.

I had constant numbness and neck pain for 10 years, I have been to the ER, done MRIs, walk in clinic, neck specialists, physio, everything. Eventually i gave up as no one really gave me an answer, or diagnosis, every doctor would look at me like it was all in my head.

For better or for worse i put all my symptoms into claude (and mentioned that the only relief i get is by pushing down hard behind my collar bone which i assume is where my first rib has been displaced, pushing down here actually radiates relief of my numbness as well as my neck pain) and it spat out TOS, which, from a high level seems extremely likely.

I am furious, how did all these doctors and specialist MISS this? Ive been living in pain for 10 years (of my prime as well in sports and physical health). But, the past is the past, and all I want to do now is get better. Can anyone recommend my next steps? Do i go back to the walk in clininc? Do i request a CT scan? Looking for any advice on next steps.

I’m doing PT for my scalenectomy and I was kinda confused when my therapist started taking measurements of my leg to document range of motion. He told me that because I had been dealing with TOS for so long, the way I was carrying myself was doing damage to the leg on the effected side and that my ROM is significantly decreased when compared to the left. I didn’t ask for much more of an explanation but I thought it was interesting.

I do have very very mild hip/knee pain on that side but I never would’ve guessed they were connected. Was curious if anyone else had this experience?

Hi all, immediately you would be thinking - this is a forum for TOS, why is there a mention of forearm?

Well this quick post is to create some awareness in terms of the impact of forearm muscles. The majority of my problem was scapula/rotator cuff area but the last piece of the puzzle to fix the remaining symptoms was getting SHOCKWAVE therapy on the muscles/tendons near my pronator teres muscle (which massage didn’t fix).

I mention this as the Doctors were quick to opt to go for surgery in the upper area which would HAVE NOT fixed the whole problem.

This is highly specific so this may not be relevant but thought it worth mentioning as I haven’t seen one post on here as such.

All the best

I had a partial rib resection in the summer of 2022 after a blood clot (DVT) in my right arm due to Paget Schroetters. I haven’t been able to sleep on my right side comfortably since getting the rib resection. Since then I’ve also developed pain associated with sleeping on my back and both sides. Even sitting against something if there is pressure on my right shoulder causes pain. The pain is mild while I’m sitting/lying. The more severe pain is if I move my arm certain ways after. For instance if I lift my arm up I get a very sharp pain in the area. It feels like my muscle is getting caught on the end of my rib. After 30 minutes or so this subsides. The only comfortable sleeping position now is basically sleeping on my stomach. The worsening of the pain coincided with giving birth, breast-feeding and carrying my daughter around frequently (now 18 months). I’m not sure the exact role this has played if it would be could be because of muscle hypertrophy from carrying her or added stress on the area in some other way.

I’m wondering if others have experienced this. If so, have you figured out what’s happening. Would also love any tips. Thanks!

Those who did this. How did you go about getting insurance preapproval? I am scheduled to see Dr Donahue out of state in 2 months and am getting conflicting info from his office and my referring doctor about how to go about getting it. Any advice you can offer on the insurance situation would be so helpful

Unless you know specifically that your underlying TOS root cause is something like an extra rib that requires surgery, I highly recommend locating a PRT (postural restoration therapist) near you to help manage your gait and functional posture.

I've posted here before, but I'm someone who spent/wasted countless hours being told by doctors and standard PT trainers that my hip, breathing, and arm symptoms couldn't be related as different muscle groups. It was only with my own research and using AI that I was able to learn about the concept of PRT and I found a professional who has helped give me my life back.

In fact, I'd say I've not only recovered, but I've improved mobility even beyond what I thought was recovered. In my case, hypermobility and weak core / glutes resulted in severe guarding via hip flexor muscles. This ultimately twisted my ribcage and hips to the point it was cutting off the Thoracic opening while also preventing my diaphragm from proper expansion and contraction.

Ultimately the cure/treatment was just a few band workouts highly focused on proper form. Much more successful that traditional PT and 20+ drills you're expected to remember.

Feel free to PM me if any questions!

As soon as I go into bed, like my mid-back (like inner trapezoid, or like the shoulder blade part) just feels so like achey. I don’t know how to describe it. But it just feels like I need a a massage kind of thing, like very uncomfortable painful feeling.

Does anyone have any advice on how to sleep? It would be greatly helpful Thankyou.

Had my venogram today. I need someone to help me understand my results if you can! When I did my arterial and venous ultrasounds 3 weeks ago, I was told I have severe positional compression, right arm, both artery and vein with normal flow at rest. Then, I was sent for a cervical spine xray and chest ct with arm up. Xray showed no extra cervical ribs. CT showed that when my artery passes through the first rib and clavicle it is compressed to a near flat position, remainder of artery is unremarkable. Had my subclavian vein venogram today with my surgeon to find out that the compression is not positional. That this compression is with arm at rest also. 94.6% stenosis to be exact and I’m full of collaterals compensating for this. My question is if the vein is actually being compressed at all positions, isn’t the artery being compressed at all positions too? I asked my surgeon and he said he’ll just have to see when he gets in there. I’m supposed to receive a call with my surgery date in the next few days for first rib resection and possible vein repair is what my paper says. My artery wasn’t seen on the venogram obviously but if there’s damage to it as well, can the artery be repaired? I’ve never had a blood clot and my symptoms are minor which blows my mind with a 94.6% compression. I’m trying not to get scared but it’s hard. My surgeon said I really need to do this surgery with this kind of compression or I’m definitely going to clot and I understand that but I am worried about my artery too.
My results from venogram today:
Diagnostic findings:
- Right mid subclavian vein: 90-99% compression.
- Right distal subclavian vein: 0% compression.
- Right proximal subclavian vein: 0% compression.
- Right axillary vein: 0% compression.
- Right upper basilic vein: 0% compression.
Interventions:
Right Proximal subclavian vein
- IVUS 0.018 IVUS
- Residual stenosis: 0%
Right Mid subclavian vein
- IVUS 0.018 IVUS calculated stenosis: 94.6%
- Residual stenosis: 90%
Right Distal subclavian vein
- IVUS 0.018 IVUS
- Residual stenosis: 0%
Recommendation:
Schedule first rib resection with possible subclavian vein repair.

​

Good morning all, I recent saw Dr Max Wohlauer who is not fully convinced I have just TOS or TOS at all. I wanted to post some symptoms here and maybe someone can relate. I already had improper Carpal tunnel surgery so I am scared of a misdiagnosis again.

Left side - 11 years ago I had deltoid pain for a month prompted by a shit in my arm. After this it really settled into deep nerve pain under my left scapula. This is still my primary pain. We suspect the dorsal scapula nerve is pinched. I have Trap and Rhomboid tightness and pain like crazy. This all is the majority and primary pain. My left scapula wings out often and causes so much discomfort and problems moving and using my left side and get comfortable. My scalenes are also rocks and I have headaches daily. I no longer have deltoid pain and rarely hand symptoms at all.

Right side - we believe this is probably aTOS, secondary condition from a decade of guarding. I also have tight rhomboid and traps but not as bad same with scalenes and headaches. My right side has been more tolerable but in the last two years was misdiagnosed with carpal tunnel on the right and had the release surgery. I still have carpal tunnel symptoms, pain, tingling, cramping, dropping. We were able to see blood being compressed on and MRI almost confirming TOS on the right.

What makes it worse -

Sitting without a back support flares my left scapula in seconds. Laying on my side without a pillow haunches me inwards and hurts my back. These are honestly the worst. Beyond that it's lifting things, repetitive arm movements, washing hair dishes etc etc etc.

With all this Max has me back in PT which I'm not thrilled about after 11 years of PT. But I am also significantly worried that surgery might make my left side infinitely worse and might not be the right dx. Thanks in advance for the longer read

I had a first rib resection and scalenectomy 2 weeks ago. The surgeon reported that it was successful and my pain from the nTOS is completely gone.

When I woke up from surgery my arm was completely numb and I had zero motor control. They told me this was to be expected at first while the nerve block wears off. It's been two weeks and I can still barely control my hand and it takes a lot of effort to bend my arm at the elbow.

Lifting my arm away from me or up is out of the question. The muscles do not respond at all even though there's no pain. My arm is still mostly numb with some feeling returning to my fingers.

Is this something that others have experienced? How long did it take to resolve?

My neck pain started over 20 years ago when I could not support myself without arm rests. At the time I didn’t know why. It took a tos diagnosis to see the connection. In the end I didn’t realize it was my hyper mobility. My shoulder girdle has always fought tooth and nail to support my neck. It has degenerated significantly, along with quality of life when I sit. Thoracic outlet down both arms. Trap spasms. Occipital headaches. Laying down takes all the weight of my head away. It’s just depressing. Like wth is wrong with me.

I am looking for a neurogenic TOS specialist in Australia. The only one I have found so far won't budge on doing botox first. I do not want botox as it's a neurotoxin and will worsen other conditions I have. I can no longer raise either arm.

Any suggestions on who to see? I am prepared to travel, so location in Australia isn't an issue.

Does anyone recommend buying anything for first rib resection, Scalenectomy and pec? I am flying to get the surgery and flying home. Is there anything that helped you or that you wish you had?

i’m struggling and can i get advice and i have moderate autism so if i say anything mean i promise i don’t mean it

my symptoms getting really bad and my arms get pale and spots i can’t feel or move my whole arm if they aren’t really close to my sides and the inbetween front and side of my neck hurt so badly and pulses and goes a bit into my chest and feels like a lot of pressure like a balloon stretching and i can’t feel one side of my face but i can still move it somehow

it’s gotten worse the past week and i can’t wash my hair anymore and struggle to shower and i can’t write or type in school and the pain is bad sometimes feels like ripping or getting shocked down my arms then burning my skin

it even hurts to sleep i don’t sleep much anymroe

i have 4 hour long appointment to see if i get surgery or not but it months away and i hurt bad and can’t do school well anymore please can someone have advice for me