Surgery for thoracic outlet syndrome

@snowmass I think we have communicated before. I have TOS and have had a cervical spine surgery fusion. The scar tissue from that is very close to the TOS issues, and the TOS issues also tend to cause spasms and rotate my spinal vertebrae escalating compression on nerves in the shoulder because that side is tighter. Since you had a lung removed, you do have surgical scar tissue that may be affecting your TOS. Any surgery adds more scar tissue and tightens the fascia and that is why TOS surgery doesn't have great statistics for success. The vascular thoracic surgeon who diagnosed mine years ago said surgery was only about 60% effective and could make you a lot worse because of scar tissue. I believe that. I had not had surgery until the C5/C6 fusion which initially made my TOS worse by causing inflammation and then tightness nearby. I have to periodically stretch everything to relieve the pressure. Surgical scar tissue can be loosened with myofascial release stretching. My tightness extends from my neck and jaw, through my rib cage and to my pelvis. It causes one side of the pelvis to be pulled forward, and it limits the proper expansion of my rib cage on that side. I was getting a lot of respiratory infections because that side didn't move enough to move the phlegm out and I have allergic asthma. I work on this to get that side moving better. TOS isn't just a shoulder/neck area issue; it affects the whole body and proper alignment and movement. My PT always used MFR when getting my cervical spine realigned, and also used a Dolphin Neurostimulator to block pain signals at the nerve roots. That was before my spine surgery when there were lots of muscle spasms.

Myofascial release helps a lot, but it take weeks of work. It is worth locating a therapist with an expert level certification in the John Barnes methods of myofascial release and trying this to see if you can improve your condition. Once you understand this, there will be things you can do at home to continue working on loosening fascia. I do get locked up in my neck from time to time, but for the most part, I can resolve those problems on my own by replicating what my PT has done using tools like balls, etc and using my own body weight against them. I listen to where my body is tight and I will move into a position that stretches the tight area and hold it while I can pull on that area with something, perhaps even my hand to create a shearing action. I just wait until the tightness subsides, and I am feeling fascia releasing when that happens. I know I'm successful because it relieves the pain immediately and numbness on the side of my forearm. If I do something with excessive yard work like pruning and clipping with manual tools, it can kick up the neck spasms and aggravate the TOS. I just had that happen , but I've been improving over the last several days because of doing my own physical therapy.

Surgery is a last resort. With your various surgical consults for TOS, have the surgeons explained their positions of why they recommend their procedure over the other suggested procedures? Are any of them familiar with myofascial release? MFR was recommended to me by that vascular surgeon who diagnosed me years ago, and I have been dong MFR on and off for the last 14 years with my physical therapist. I also helped a lot with my spine surgery recovery.

I may have shared this discussion and provider link with you previously.

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

Yes we have. Since then my TOS has extended to my left side as well and currently getting a lot of sinus and eye pressure making much heaviness in the head. The doctors I have seen did not mention MFR but Botox injections and surgery as the ultimate solution with first rib removal for less chance for recurrence. Success rate they mentioned was about 74% if i remember correctly. Do you get much sinus/head pressure from TOS? Did MFR help with it? Because of my neck tightness/pain I am a bit afraid to combine my PT currently focused on Neck decompression with MFR for TOS… what are your thoughts?
Since I was denied from Mayo perhaps i should try Cleveland clinic…
As for my cervical issues, I have c5-6 disc burge and c6-7 stenosis with multiple areas of facet joint disease. Several doctors I have seen did not recommend any surgery but pain mgmt for steroid injection tries…

@snowmass You can still continue your PT and add MFR. That will not interfere. MFR is like kneading bread dough, like a massage where the therapist pushes against the barrier (tightness) and just holds that shearing pressure waiting for a release. I get muscular headaches on the back of my head usually one sided from TOS on the side that is tighter. It has taken me a long time to realize that the slight rotation of vertebrae caused by the muscles spasms from TOS is causing that pain when it stretches muscles on one side and they complain. I have had it rotate C1 & C2 and even all the levels including my fused C5/C6. Botox injections are supposed to temporarily paralyze the muscle spasms. I think having cervical disc issues is also adding to the problem as it did for me. Since my cervical C5/C6 fusion, the muscle spasms have calmed down, but the can happen if I sleep wrong with my neck in a bent position or fall asleep siting up. I continue to maintain with stretching and MFR work I can do on my own. You have nothing to loose in trying MFR. You don't need to get a further diagnosis on TOS to try MFR. Just being in pain is enough to warrant physical therapy, and the MFR therapist has to code this along with other modalities that the insurance company accepts. Sometimes they will not just pay for MFR as just a manual therapy. My experience is that overuse of muscles kicks up TOS and causes pain, and stretching out the tight fascia relieves pain and restores better movement. You won't know if it helps you unless you try it. Stress also increases issues with TOS. That is something you can't always change, but I try to not let things bother me. (Easier said than done.) That means I have to step away from relatives who are difficult people. Doctors understand that this is something that exacerbates TOS.

Think of it this way. You have tightness in your neck as if you have a bunch of rubber bands pulling on your neck (muscles), and it can easily get just a bit out of perfect alignment and get stuck like that. MFR loosens those rubber bands and allows the vertebrae to get into better alignment. Because of yard work I was doing recently, a couple of vertebrae were locked in a not so good position and I had numbness on the side of my arm until I worked on it with my stretches and massaging the muscles. The facet joints on both sides clicked as it got realigned and the pain stopped. It took a few days of my working on it to relieve it completely. I feel the tenderness of muscle pain into my scapula, in the SCM muscles that turn my head, and muscles that support the cervical spine as well as aching down my arms. Because I'm on Medicare now, and they limit how much PT a person can have, I have to do more on my own, and see my PT when I can't resolve my own issues. It was better when I could see her more often. My PT advises to avoid surgery for TOS. My hands used to turn blue/purple and get cold. That doesn't happen anymore. It's also better now that I don't work at a stressful desk job on a computer anymore. Some of your arm pain could be coming from your cervical stenosis and it's difficult to tell where most of the pain is coming from or if it comes from multiple areas.

Are you seeking a surgeon for TOS or cervical disks or both? How long have you been in physical therapy?

It definitely makes very difficult to figure out or treat when cervical and tos issues are present together.
For cervical, saw several orthopedic surgeons and none recommended surgery so far. Last person said it’s hard to tell if surgery will help unless tried and recommended pain mgmt doctor.
As for tos, saw three doctors so far, two being for consultation.
So I am still hesitant about any surgery but my recent changes in getting more pressure issues in the head which is greatly affecting my daily, I am getting desperate.
However I just had shoulder Botox done to alleviate tension headaches at neurologist office which I regret a bit since it could have been from tos. So I have to wait till Aug to do another one for tos to avoid anti body development. I suppose I could do scalene block injection instead which is more short lived in the meantime but I have to discuss with doctor about it. But at the same time I am really getting tired of injections and lidocaine effects ( had done a few trigger point injections for knots on shoulder and back) so wanted to stick to PT and other modalities.
I have tried 6+ months of pt for pinched nerve/tos(during diagnostic period) with not much success then my neck pain became worse so now I am concentrating on the neck. But again the pressured head has become debilitating so I am torn.
Stress definitely plays. Just tried to go back to work part time and just few hours of computer staring gave me so much neck tightness and pain.
Life is upside down and try to tell myself it’s a long battle but with constantly changing symptoms or priorities of pain and no treatment plan supported by knowledgeable doctor it’s a challenge to say the least and how long is this going to continue. I know there are lots of others with much worse illnesses but can’t help to lose hope at times. But I tell myself I can only try as long as I can and accept and love my new self. I do talk to a therapist some times.
Btw do/did you have difficulty lifting or holding a gallon of milk ?

My lung surgery was 30 years ago and most doctors said my issues probably has nothing to do with it but it’s funny how non doctors mostly say it probably plays a role still since body parts are connected which I think makes sense.

@snowmass Yes, I can lift a gallon of milk and pour out of a jug. I can also lift the 28 lb saddle for my horse up to chest high, but I wouldn't be able to hold it here very long at all. I did carry 2 gallons of fly spray (1 in each hand) from the store out to the car and that was exhausting me, but it was after a day of riding the horse for an hour, and the worst thing I did that day was use manual hedge clippers (scissor like) and bend over and short clip grass to get around a chained entry at the horse trail to avoid tick exposure from long grass. I clipped a path 4 feet wide and 2 horse lengths long, and I paid for that for days. It caused the recent spasms that rotated my cervical spine. I have fairly good strength, but not for repetitive tasks. I can do lifting if it is just for a short time, otherwise it makes TOS worse with spasms. When I paint (I'm an artist), I need to hold up my own arm and support the weight while controlling the movement. That can be tiring too after doing it for a few hours.

If I try to do pushups, I am in worse pain from TOS. The more I bend my neck forward and look down at a keyboard with my arms forward typing, the more my neck hurts and aggravates TOS. I never learned to type without looking. What helps me feel better and builds core strength that supports my spine is riding my horse with good posture.

Where is your incision scar from lung surgery? What do your cervical MRI reports say about the stenosis or nerve root compression and is it rated as moderate, severe, etc? Do you have spinal cord compression?

TOS and cervical spine issues cause overlapping symptoms and can even affect the same nerves in different places. That is going to make it hard to determine if both are causing your symptoms or if one issue is causing more of it. The neck spine issues will cause spams and the TOS will also aggravate that as it is all connected by muscles. That's why I think MFR would benefit you, because you may be able to improve your situation and be able to tell where the symptoms are coming from, and you'd have the feedback from the therapist and be able to discuss it. Have you have nerve conduction studies and EMG testing with a neurologist?

Doctors study dead tissue and cadavers, so they can forget what happens with living fascia and not think about it. That is why they may not understand MFR, and also because they may not have experienced it themselves, and don't think about scar tissue in the fascia itself. You certainly don't want to go through unnecessary surgery that could make you worse off.

I was recently diagnosed with Thoracic Outlet Syndrome. I have an appointment on March 20th to see a vascular surgeon. While researching TOS, this was the most informative explanation I have come across.
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/
I’m pretty sure mine was brought on by playing baseball for the past 50 years. I believe the symptoms started around 10 years ago, but doctors are a little lost on this topic unless they specialize in it. I even mentioned TOS to my primary care doctor a year ago and he said TOS doesn’t cause neurological issues like I have. OMG so not true.

The first time I mentioned symptoms to my doctor was back in 2018. I had difficulty explaining my symptoms, but I remember saying it felt like my arm was dead when playing baseball. I told him it felt as if my right trap and lat were not getting blood supply for lack of a better term. He said take gabapentin which heals nerves. I read up on that drug and never took one.

The website I have attached explains all of my initial symptoms a year ago when I was sent to a neurologist, neurosurgeon, endocrinologist, and rheumatologist. Everyone said I was fine or had just minor to moderate issues, but nothing that explained my symptoms. TOS explains everything. I don’t see how a doctor who has a patient with all of the symptoms of TOS, and makes it well known that I have played a ton of baseball every year, and TOS is a common affliction of baseball players, can miss such an easy diagnosis. They could have saved a lot of money on unnecessary testing over the past year with a TOS ultrasound test that I failed miserably.

Now I can’t wait to see how they go about fixing this. I have tried PT for only 10 sessions so far and had no improvement. I am willing to try anything at this point. Damn I love baseball. If they need to take a rib, off with it I say. Plenty of major league players have done it and returned. I will update you after my next step at the end of March. I hope you find some relief.

As far as MFR, the website I have attached actually shows where stretching it might be doing more harm than good. Take a look. It does feel good, but I feel like I have stretched it every which way possible for the past few years. It might be time to concentrate more on strengthening it.

As always, thanks for the info Jennifer. Push ups always aggravate mine also. I started having success by keeping my hands closer to my body which is more tricep concentrated. The worst is trying to keep my arm straight out in front of me for more than 30 seconds. I can’t even keep the remote up very long before I have to rest my arm. Brutal! Keep us updated snowmass. Thanks!

@closer0043 I often share the MSK neurology website. The owner of that site says some things that my PT doesn't agree with. I also suffer from TOS. In my case, there is a fine line with strengthening in therapy before it increases symptoms and tightens the muscles and fascia more. I think he criticizes the exercise to squeeze the scapulae together and move them downward.

What really helps me a lot is the MFR myofascial release. This is something that takes a lot of time to be effective as you work through layers of tight tissue, and you need to correct the bad habits that got you there. Sometimes it's an injury like a whiplash underneath it. Over time, we all get tight, so once you have done MFR and re-gained movent and function, you'll need to keep it moving so it doesn't tighten up again. My vascular surgeon who diagnosed TOS advised against TOS surgery because it creates scar tissue that can make it worse. If a person has a cervical rib in the way, that may be a different story. Once you do surgery, you can't undo that choice and will have surgical scar tissue.

With MFR work, you need to find a therapist trained in the John Barnes methods who understands that the stretches are slow and gentle because stretching too hard will cause the body to resist more, or will cause fascia to tear creating more scar tissue. It requires patience and you have to wait for the fascia to unwind itself and release the knots.

As for diagnosis, most doctors miss TOS and patients go misdiagnosed for years. Per one of my neurologists, this is glossed over in medical school with only a day or 2 spent discussing it. I know how frustrating that is, and I had doctors discounting it even after another doctor diagnosed it. My hands used to turn blue and get cold when the circulation was cut off. They didn't believe me. MFR really does help and may be worth a try before someone talks you into surgery. Look for knowledgeable specialists for TOS at medical centers that list it as a condition that they treat. It was my vascular surgeon who recommended MFR therapy.

Thanks Jennifer. It’s a shame that my original doctor only had to give me a ROOS test to identify TOS. When my PT guy gave me the test, my hand was so white and cold, he called over 2 young therapists to see the results so they could learn what a positive TOS result looks like. This PT guy was jamming his 2 fingers in my armpit and trying to release a muscle that way. I just think the PT was not that helpful since they really haven’t identified what kind of TOS I even have yet.
The only reason I question the stretching is because when throwing a baseball as hard as one can, the muscles and I guess nerves, are extremely stretched. I have read where overstretched nerves can be a cause of injury. I feel that’s what happened to me. Plus I have been avoiding any overhead shoulder exercises and upright rows at the gym because I have read that excessive muscle in that region will hinder a throwing motion. So I’m overstretched and have weaker than usual muscles in the trap and neck area.
That’s why they call it practicing medicine. It’s all trial and error to me. What works for some doesn’t work for others in many cases, but I love gathering new ideas here, and will definitely look into your suggestions if my doctors can’t fix me. Keep fighting!

@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!