Surgery for thoracic outlet syndrome

I appreciate your experience Jen. To be honest, I had forgot about TOS until I read your post about it. That lead me to seek out a sports doctor for a TOS evaluation. I’m thinking I will end up trying the TOS fix first. We can compare notes afterwards. I agree my cervical issues might be causing some of my symptoms as well. Plus, my lumbar is causing my slightly numb feet. I’m sure I have more work to do no matter what I choose to tackle first. That darn brachial plexus sure is important for a lot of functions in the body!

At this point, I am not considering any TOS surgery because CCI and my upper cervical issue is bigger issue for me.
If your issues began that long ago with throwing and the heaviness you feel ( heaviness could mean nerve damage or compression ), I wonder if you may have some brachial plexus injuries. I am not sure if decompression surgery would fix it… although neurolysis is part of scar tissue removal common with this surgery it seems and nerve injuries takes very long time to regrow I read, like 1 mm per day if it can recover. If you can can you consult for brachial plexus injuries in addition to get a more comprehensive situation awareness? Can you do the Beighton score test (you can find it online and evaluate on your own)to see if you have hyper mobility? I read it’s not rare baseball players have the TOS issues or swimmers but if you are predisposed by hyper mobility, not sure what that means in terms of retaining stability after rib resection and scalene removals. All of the PTs I have met were against the surgery. I am due for MGH in July with Dr Donahue but Botox scares me because of my hyper mobility and my recent experience with Botox for cervical dystonia making my CCI much worse. I am hoping PICL procedure will put me in a better place by that appointment time so if I must, it can give better evaluation results. I am mostly counting on MGH expertise because my anatomy is already compromised with past lung surgery which resulted in right lung hyper expansion and cardiomedstinal shift to the left. Likely rib resection is not an option due to this because they push the lung out of the way to remove the rib from your under arm and I don’t have another lung to sustain me while. So my likely surgical option might be scalenectomy but I also met a girl who developed CCI after scalenectomy….
It’s complicated. Will see what Dr Donahue’s opinion would be.
My understanding of TOS surgery is decompressing what is abnormally compressing on nerve or vein. The 74% success rate is probably due to the difficulty of identifying the compressed locations?
One doctor also told me that a few repeat of Botox sometimes relieves the compression permanently but that probably depends on target location…
I am sorry I am probably confusing you more. I just don’t want anymore surgeries with long term negative effects but that varies person to person. Surgeries are making damage to fix something. Sometimes you need it, sometimes you can do without. Sometimes you never know.

The scalene muscles (anterior, middle, and posterior) attach to the cervical vertebrae:
• Anterior scalene: Attaches to the transverse processes of C3-C6
• Middle scalene: Attaches to the transverse processes of C2-C7
• Posterior scalene: Attaches to the transverse processes of C5-C7

All three scalene muscles insert onto the first or second rib and play a role in neck movement and respiration.

@closer0043 In reading our conversation, I wanted to comment further. The scalene injection you had was likely to diagnose if that was the source of the problem, and you had temporary improvement. Ask your doctor what that means. I think that result may predict what improvement surgery may provide. When I had a spine injection done as a diagnostic, I also had temporary improvement and relief from pain prior to my spine surgery. I also wanted to mention that a collapsed C5/C6 can cause arm weakness. I did not have nerve root compression, but some slight compression of the spinal cord at that level caused so much weakness that I could not hold my arms up. Driving a car or pushing a shopping cart was exhausting, and I had to take a nap afterward. My spine surgery resolved that completely and I regained strength in my arms. That is important because I am an artist. I think my arms are not as strong as they used to be, and I still have TOS which varies depending on how tight my muscles are. That’s why I wanted you to know that both of those issues can generate arm weakness. I think it is very encouraging that you had temporary improvement from your injection. I will be very interested in knowing how things are going for you in your treatment as you go forward. If you do have surgery, perhaps afterwards MFR would be beneficial at that time. You may be interested in knowing that my journey is a Sharing Mayo Clinic Story. It’s harder to find now, but you can search for me along with Mayo and find it. I was grateful to my surgeon for saving my talent and I painted his portrait as a gift.

It’s funny you mention PTs being against the surgery. I have been through a lot of PT over the years, and haven’t met one who ever didn’t think they could fix me to avoid surgery. I have had 8 surgeries in the past 14 years, and I only would have avoided one of them in retrospect. I had a knee meniscus clean up that didn’t help much. I believe the arthritis was already the culprit at that point. I’ve also had both hips resurfaced, both rotator cuffs repaired, ankle bone spur removed, double hernia, and a partial knee replacement. All of my surgeries have been very successful. Other players are amazed when I tell them I have 2 metal hips!
The one other symptom I forgot to mention from the TOS is I started having trouble breathing deeply about 2 years ago when running sprints. Alhough, I still can’t find a doctor to agree with any of my neurological symptoms having anything to do with TOS. I still have occasional bouts of dizziness, frequent head ringing, fatigue, brain fog, and facial numbness on the affected side. They just dismiss the MSK Neurology TOS explanation as not peer reviewed,

I just don’t want to have a stroke from trying to play through this. Look up the MLB pitcher JR Richard when you get a chance. He was an all star pitcher who had a stroke from a blood clot in his neck while warming up before a game or practice. He was complaining for a couple of months of having a dead arm when throwing and having arm fatigue after not many throws.

My only surgery was lung surgery which has changed my anatomy over the years as mentioned and PTs comments were wrt TOS surgery.
No regrets on the lung surgery since it has given me another 30 years so far but read entire pneumonectomy is to be avoided now days if possible.
My comments were wrt to similar neurological symptoms like dizziness… possibly coming from cervical issues, for me I have found out and since it was so difficult, just wanted to share but of course my journey should be read with grain of salt.
Hope you are in much less pain and closer to clearer diagnosis with injections.
Please let me know if you have any other questions on my comments. 🙂

@closer0043 You are correct about TOS causing breathing issues because of causing so much tension on the rib cage interfering with its motion. When ribs expand, it creates a vacuum that expands the lungs bringing the inhalation. Often TOS is worse on one side, and for me my left side is tighter. The left side of my ribs don’t move to expand as fully as the right which means the left lung does not move as much. I have had repeated left sided chest infections because the phlegm does not clear as well. I also have allergies and asthma that add to that problem increasing the phlegm.

I do stretch muscles in my neck and chest using objects to push against the skin to create a shearing force. I go by feel of where the tightness is and I hold the pressure and wait. I can feel when it loosens when fascia starts to slide, and after this, I am able to start clearing phlegm from my lungs. I use tools to be the hands of a massage therapist and the key is to hold the shearing pressure and wait for a change which could take 5 minutes. I use small balls, a Davinci tool. and various things like a question mark shaped wand that has rubber knobs on one end. I can lay on my back and use both arms to direct it using the weight of my arms to help. I can also lay on my side and roll against this to get a force on the pectoral muscles from the center of the chest outward. I will reposition this and change direction just going by feel. I get a push upward by using a tool against a doorway while I am standing and pushing my chest upwards against it. I hope your PT understands this self massage, and this is how MFR works. This is how you stretch the fascia without having to stretch your arms in ways that aggravate the TOS.

Have your PT show you how to do this and you have to stay off of the arteries and veins when applying pressure or a direct nerve compression such as in the arm pit. You can work on the hard traps and Lats. Webbing straps are useful for arm pulls if you secure it on one end and use body weight to lean against it. I find it useful to work the area right under the collar bone and pull downward with a tool like a ball. This will pull on the neck on the tight fascia that is gluing it together and up into the scalenes. I can also lay face down on top of balls positioned on my chest and abdominal muscles.

If you can do this MFR stretching now, that may help your surgeon if your tissues can be loosened. I did this prior to my spine surgery and that helped in being more supple for retraction during surgery. With your multiple surgeries, you have scar tissue that adds to tightness. Think of it as a connected net holding your body together. My PT can stretch on my neck and I feel the pull down my entire body to my ankles. TOS is like wearing a straight jacket,

You are like talking to a mirror sometimes. I have been self massaging with a hard rubber ball and a lacrosse ball for the past 5 years. I usually work the trap and lat areas, but I will now try to target below the clavicle. I know my right side is very droopy from all of the throwing. I also used to have 2 rubber balls duct taped together that I would lay on with the balls on each side of my thoracic spine. I would then lift my arms over my head one at a time to massage my upper back. That would give me a lot of relief.