Surgery for thoracic outlet syndrome

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!

@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/

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!

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

@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?

@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.

My TOS imaging revealed compression on subclavian vein and EMG test also showed slowed signal as well as cubitel tunnel syndrome. Saw three doctors, Cedars, UCLA and USC. First offered scalenectomy and second offered rib resection and scalenectomy and the third explained the usual procedure for rib resection and scalenectomy but also offered referral to Mass Gen Hospital to see Dr Donahue.

I also had mild C5-6 disc bulge with osteophyte and mild height loss at the time of TOS diagnosis which spine doctors also said that it is non-surgical and not the cause for pain and neurological symptoms . Within one month from scalene block injection on anterior and middle scales on the right, I started having mild lightheadedness, brain fog and tinnitus.

Thru my numerous imaging reports, I learned that what the report says or what the dr sees are very subjective to their experience and training. For example, some would say mild and another severe, not to mention normal vs compression especially when it comes to very specific conditions. I won't bore you with my story but what concerns me is your mention of how dizziness/brain fog lessening with stopping the throwing. Have you tried botox or scalene block injection for the symptoms relief of TOS if you are not hyper mobile (botox is not good for hyper mobile)? Mass Gen Hospital has you do botox instead of scalene block injection because it is more definitive due to the duration of affect to sort of confirm the success outcome of your surgery if deemed necessary I believe. (Unfortunately the wait for MGH is like a year, they do a lot of revision surgeries as well)

One other thing, I have had two scalene block injections (usually local anesthetic and steroid) by two different providers. One was anterior and middle scalenes only and the other was the 2 scalene muscle, subclavius and pect minor all at once. Interestingly, the latter, gave me more relief. Sometimes the TOS surgery involves pect minor release as well...

Hope this helps.