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Surgery for thoracic outlet syndrome

Posted by snowmass @snowmass, Jun 13, 2024

Hello
Has anyone had surgery for thoracic outlet syndrome?
I have been to three tos specialists and they all have different approaches even wrt surgery. One removing some muscle, another removing first rib bone and muscle via clavicle area and another first bone and muscle via under armpit area. My tos is more of neurogenic and intermittent vascular. I have also heard mostly pt and therapists discouraging surgery as well as cases of no resolution even after surgery.
My immediate functional issue from it is pressure build up from the area to neck and head currently.
With added complication with cervical spondylosis and left lung removal from years ago.

Thanks in advance.

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snowmass | @snowmass | 1 day ago
In reply to @closer0043 "Great information! However, I just saw a vascular surgeon who is suggesting a first rib dissection...." + (show)
@closer0043

Great information! However, I just saw a vascular surgeon who is suggesting a first rib dissection. My TOS is pretty severe, and she has had success with baseball pitchers much younger than me with this surgery. She is pretty sure my TOS is venous which is pretty rare. I still have 2 more tests in the next couple of weeks, and a follow up on March 11th to most likely schedule surgery.
The one thing I can’t seem to get any doctor to agree with is the brain fog and other neurological issues having anything to do with TOS. it seems strange since it’s mentioned in the first paragraph of the MSK Neurology explanation on how to identify TOS. I guess I will find out after the surgery if it is successful.
She did mention that about 1/3 of these surgeries result in little to no relief, but that could be because TOS wasn’t the proper diagnosis in the first place. I have hope that this will not only allow me to hold a dang remote control at the tv for more than 30 seconds, but return to baseball with the strong throwing arm that I once had. Well, obviously a little slower at my age 🙂
I will keep MFR in mind after I get this TOS under control. I still have sciatica that won’t seem to go away this time, and my chiropractor really didn’t help it. On to the next battle!

Jump to this post

Hello,
My journey that started with TOS has gotten now much more complicated with cranio cervical instability, cervical dystonia, occipital neuralgia…etc.
Since you mention brain fog, I just wanted to share that about a year after TOS, i started having it also along with lightheadedness and heaviness at the occipital area. One doctor I saw for my symptoms who was familiar with CCI said that TOS is caused by cervical issues which tightens the scalene and etc sometimes. Having said that since only mild disc bulge at c5/6 with bone spurs was detected via MRI at the time, it’s hard to pinpoint. Many unhelpful things happened, chiro, acupressure, numerous pts and in the end, I currently have found that there are more things going on. CCI with translational bai 5-6 mm, mild cervical and thoracic scoliosis as well as sacroilitis with uneven pelvis. Without going into too much details of my complicated journey in 2024, just wanted to add checking for any cervical issues may be beneficial?
I also found out that being hyper mobile predisposes you to TOS…
Best wishes to you

REPLY
1 reply
snowmass | @snowmass | 1 day ago
In reply to @jenniferhunter "@closer0043 The way that MFR works is to apply a shearing pressure and just wait for..." + (show)
@jenniferhunter

@closer0043 The way that MFR works is to apply a shearing pressure and just wait for the fascia to start to unwind itself. It is gentle. When you do an aggressive stretch, it can tear the fascia creating more scar tissue in it which sticks it together. Nerves don't like to be stretched or compressed and they pass through some pretty small and tight spaces. Here is our MFR discussion where you can learn more. This has helped me a lot. TOS is annoying because if you overexert yourself, it can aggravate it easily.

Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
There is a provider search at http://mfrtherapists.com/

Jump to this post

Thank you Jennifer as always for your insight and care.

REPLY
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | 21 hours ago
In reply to @closer0043 "Great information! However, I just saw a vascular surgeon who is suggesting a first rib dissection...." + (show)
@closer0043

Great information! However, I just saw a vascular surgeon who is suggesting a first rib dissection. My TOS is pretty severe, and she has had success with baseball pitchers much younger than me with this surgery. She is pretty sure my TOS is venous which is pretty rare. I still have 2 more tests in the next couple of weeks, and a follow up on March 11th to most likely schedule surgery.
The one thing I can’t seem to get any doctor to agree with is the brain fog and other neurological issues having anything to do with TOS. it seems strange since it’s mentioned in the first paragraph of the MSK Neurology explanation on how to identify TOS. I guess I will find out after the surgery if it is successful.
She did mention that about 1/3 of these surgeries result in little to no relief, but that could be because TOS wasn’t the proper diagnosis in the first place. I have hope that this will not only allow me to hold a dang remote control at the tv for more than 30 seconds, but return to baseball with the strong throwing arm that I once had. Well, obviously a little slower at my age 🙂
I will keep MFR in mind after I get this TOS under control. I still have sciatica that won’t seem to go away this time, and my chiropractor really didn’t help it. On to the next battle!

Jump to this post

@closer0043 You do have a lot on your plate. It’s a decision you can’t change after the fact and surgery will create scar tissue. My PT will mobilize my first ribs that get hiked up from the tight muscles which helps and the MFR work too. Do you think trying MFR before heading to surgery could help? I do know there are a lot of variations of TOS. My hands used to turn blue and get cold which doesn’t happen now, but over exertion can trigger some of that to a lesser degree, but I know some PT things that I can do to help. TOS is controversial among doctors and easily misunderstood. Are you going to consider other opinions? Mayo would be a good place to evaluate TOS if that is within your reach.

REPLY
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | 21 hours ago
In reply to @snowmass "Hello, My journey that started with TOS has gotten now much more complicated with cranio cervical..." + (show)
@snowmass

Hello,
My journey that started with TOS has gotten now much more complicated with cranio cervical instability, cervical dystonia, occipital neuralgia…etc.
Since you mention brain fog, I just wanted to share that about a year after TOS, i started having it also along with lightheadedness and heaviness at the occipital area. One doctor I saw for my symptoms who was familiar with CCI said that TOS is caused by cervical issues which tightens the scalene and etc sometimes. Having said that since only mild disc bulge at c5/6 with bone spurs was detected via MRI at the time, it’s hard to pinpoint. Many unhelpful things happened, chiro, acupressure, numerous pts and in the end, I currently have found that there are more things going on. CCI with translational bai 5-6 mm, mild cervical and thoracic scoliosis as well as sacroilitis with uneven pelvis. Without going into too much details of my complicated journey in 2024, just wanted to add checking for any cervical issues may be beneficial?
I also found out that being hyper mobile predisposes you to TOS…
Best wishes to you

Jump to this post

@snowmass I am similar to you in that I had cervical spine issues along with TOS and pelvis misalignment. There are ways to realign the pelvis. All of that affects everything else. My PT was addressing all of that and full body alignment with myofascial release. Have you tried anything like that?

REPLY
1 reply
snowmass | @snowmass | 20 hours ago
In reply to @jenniferhunter "@snowmass I am similar to you in that I had cervical spine issues along with TOS..." + (show)
@jenniferhunter

@snowmass I am similar to you in that I had cervical spine issues along with TOS and pelvis misalignment. There are ways to realign the pelvis. All of that affects everything else. My PT was addressing all of that and full body alignment with myofascial release. Have you tried anything like that?

Jump to this post

@jenniferhunter
PTs are afraid to work on me with CCI symptoms which has become more debilitating as it is progressing than TOS in 2024. Unfortunately, there are about 5 neurosurgeons in US who are familiar with CCI when it falls into the grey area of not so severe where you need c0-1/2 fusion right away. There is one Regenexx location, Centeno & Schultz Clinic, in Denver, CO that does bone marrow concentrate/PRP to address CCI issues due to ligament laxity (many from auto accidents/sports accidents/hEDS) using procedure called PICL (Percutaneous Implantation of the CCJ Ligaments) which I am waiting on in April 2025 as a non-invasive treatment next to fusion surgery unfortunately because my recent botox treatment ( Jan 2025) for cervical dystonia made my CCI so much worse that I need to wait for it to wear off (3 months) before PICL. I am seeing a visiting MFR lady who has worked on dura flow because my nervous system is so hyper being upright with CCI. I will ask her about pelvis treatment next time. There is no guarantee that PICL will work either since these treatments are individual based ( your stem cell count/system wide inflammation level/no injuries during the long months of healing, 3 to 6 months to a year) but some had success so that is my hope.
It's really unfortunate how unfamiliar medical population is from radiologists to neurosurgeons...wrt upper cervical issues...losing time/functionality while passed around so many consults. This has been just how it is for me. Hope you are well Jennifer.

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