Thoracic outlet syndrome

@emontalvo55 Hello and welcome to Connect. I do have thoracic outlet syndrome. There is surgery for TOS, but in my case, my surgeon advised against it saying it had only about a 60% success rate. Surgery creates scar tissue which would likely make TOS worse. Some people have an extra cervical rib that can be removed, and sometimes the scalene muscles are removed. What was recommended to me was to do myofascial release therapy which stretches out the overly tight fascia and scar tissue that is causing compression. I am also a cervical spine surgery patient which did create fascial scar tissue very close to the area of TOS involvement. Initially, it did make my TOS worse, and I still have a tight area that connects to my surgical scar on my neck. Here are some links that may be of interest about TOS and our myofascial release discussion which has a lot of informational links in the first few pages. MFR has helped my TOS and my spine condition quite a bit.

Strolling under the skin ( video that shows living fascia)
https://www.youtube.com/watch?v=eW0lvOVKDxE

https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://www.painscience.com/articles/respiration-connection.php
https://www.hindawi.com/journals/scientifica/2014/248163/
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4240700/
https://www.jospt.org/doi/pdf/10.2519/jospt.1979.1.2.89

TOS is often missed and misdiagnosed. Did you have a TOS diagnosis form a specialist? Have you tried physical therapy for TOS? Had you heard on myofascial release before?

I found this on facebook from Kjetil Larsen, the physical therapist owner of mskneurology.com who writes extensive articles about physical issues. I often share his articles here on Connect.

He wrote this about Thoracic Outlet Syndrome and chronic fatigue and migraines

"Idiopathic chronic fatigue is a common symptom of undiagonsed craniovascular congestion. There are three main mechanisms:
1. Severe craniovenous outlet obstruction results in both venous and arterial hypertension and congestion. When a sufficient amount of blood is prevented from exiting the head, borderline hypoxia will occur, resulting in fatigue, brain fog, impaired memory, loss of motivation, etc.

2. Cranioarterial hyperperfusion (as seen in TOS, perhaps one of the most common culprits of "idiopathic" chronic fatigue) results in secondary systemic hypovolemia due to induced bradycardia and peripheral vasodilation, ie. a condition where systemic pressures reduce to alleviate the high head pressures. This, although ameliorating the head symptoms, will cause a paradoxical adrenal upregulation, as the body is unable to exert significant force in a hypovolemic, hypotensive state. This results in adrenal exhaustion, severe fatigue, brain fog, depression, immune suppression, and often very high propensity to infections. Also, migraines, dizziness, visual dysfunction, etc.

3. Very high stress / anxiety / OCD / uncontrolled drive. Patients who are very tense, practically walking around with a constant valsalvsa maneuver, develop very high but intermittent blood pressures. This raises central venous- as well as arterial pressures intermittently, often worsening in parallel with the degree of psychiatric illness. Also tends to severely upregulate sympathetic and adrenal activity. This is often seen in conjunction with #1-2, but all of the three problems. Thus, a biopsychosocial angle of attack is often necessary.
I recommend the following preliminary exams: MRI head and neck, CTA head or MRA MRV head, high quality fundus exam, thoracic angiogram with arms neutral, up, and shoulders back and down. Proper physical exams must also be done."

@jenniferhunter

Hello again, jennifer!

I cannot for the life of me find our last communication.

What a roller coaster this has been. Thank you so much for mentioning myofascial therapy. I told my physical therapist and he started working on my neck. He started at my occipital. He said that my surgeon had made plenty of room and he was going to rebalance stuff. Anyway there has been slight relief.

I went to New Orleans last weekend and had another X-ray and met with Dr celestre's assistant. It was very interesting to say the least. She told me that I am not experiencing thoracic outlet syndrome because they removed everything that could be causing it in the laminectomies. Ok. She reminded me that the purpose of the surgery was merely to stop further degeneration and they really didn't think I would be walking again. She also said that they told me before the surgery that it was very doubtful that I would get feeling back in my hands. She said she did not want to give me false hope.

I told her that I had made an appointment for a trial of a spinal cord stimulator. She said they take them out a lot and she did not think it would work for me. She suggested as my pain doctor suggested, waiting until the 1-year anniversary before doing anything other than physical therapy. I agreed.

I get home and I review the X-ray. In the notes it says mild djd. Joint disease? I write to her and she says it may be carpal tunnel. Okay.

My PT wrapped both of my hands on Thursday. Very slight help and nothing to write home about.

This morning, I found the X-ray that was done a month after the surgery. This was in the notes:

Prior C3-C6 posterior instrumented cervical fusion with decompressive laminectomies. Alignment stable. No evidence of hardware failure or loosening. No fractures. No marrow replacement process. Prominent C7-T1 facet joint arthropathy.

So, the last sentence is a killer. What? They did not do my c7 though it was originally planned. I looked at the attached X-ray and so that it was completely clear in the area that was done, but at the c7 it's just a cloud.

Further research seems to indicate that that is the source of the numbers tingling and pain in my hands and fingers. I think I am going to continue with all of the therapy but also make an appointment to see my pain management doctor again. I do not know if he will do an epidural, an ablation, would do a trial of a peripheral nerve or spinal cord stimulator. I have to do something because this is not going to get to get better on its own.

I no longer bring the cane with me when I leave the house! I'm also doing the first karate form. Yay!

Jennifer, thank you again for all the help of giving me. I cannot tell you how much I appreciate. I love your videos and I love how creative you are. God bless you!

@hodinator

Robert, it is very good to hear from you and I think about you often because you have achieved a lot in your amazing recovery which was so much more than the doctors expected. That makes me feel fantastic to know that you've done this and shared your progress with me. Thank you for staying in touch! Ironically, this began with another member who was upset and talking to me because they had been denied an appointment at Mayo in Florida, and it could have ended there, but I was being as helpful as I could, so they continued to engage with me and told me they had heard good things about Dr. Celestri and wanted to try him next. I didn't know that member was a retired radiologist until he later told me this, and I also knew that he was impressed with his consultation and the details of my own spine symptoms and how I related them to my condition and imaging results. This was his first personal experience of a spine condition, and even though he was a retired doctor, he had not experienced this himself. I then watched a long video about Dr. Celestri and he explained his work and methods and I thought he was someone I would have consulted if I was looking. I remembered all of this when we talked about the difficulty of travel for you to seek treatment. So that is kind of a special coincidence that helped you.

The best way to find my responses to you is to click on the bell for notifications at the top of the screen with a blue bubble for the numbers (if you have this set to receive the notifications) and you'll get a list. In that list is a drop down menu at the upper right. If you choose "posts that @ mention you", then you'll get a list of every time someone has typed @hodinator in a post. I always do that. It will get deleted from the list by clicking on it. You also could use the search bar to type "@hodinator" and also get a list.

I don't think the surgeon's team understands thoracic outlet syndrome. TOS specialists are usually thoracic or vascular surgeons. It isn't caused by a spine problem per se, but by compression of nerves outside of the spine and that can be between the heads of the scalene muscles (that connect to the spine) or in the arm pit under the pec minor muscle. Carpal tunnel causes compression of the same nerves in a different place, so that just confuses where the source of the problem is or if it comes from multiple places. There are other possible compression points and sometimes there is an extra cervical rib in the way. Physical therapy is the treatment of choice for TOS since surgery for that can just create more scar tissue that adds to the problem. You do have scar tissue from the spine surgery that can be contributing to this type of issue with fascial tightness. I keep working on mine because it periodically gets tight.

The facet joints of the spine are not where the discs are. They are to the side on each vertebrae and they allow the bones to rotate by sliding these joints. The best way to understand this is to take a turkey neck (when you have cooked a turkey) and boil it until you can easily pick the vertebrae apart and clean them. Put them back together and you will see how the surfaces connect and find the facet joints that are making contact. The discs would be gone likely by boiling and cleaning, so you can just imagine the space where those exist. The turkey vertebrae are different that human, but have similar parts. Facet joints provide stability and lateral support so the spinal discs do not bear all the load on the spine. If you go to your patient portal, you may be able to find the note from the surgeon that states specifically what he did. I can't tell from the x ray what exactly was done. I do see the rods attached and something that connects to both rods. The edges of the vertebrae look close together and rough. Typically there can be extra bone growth at those margins in older people. Bones remodel from pressure, and if there has been extra pressure because of discs that are bulging or collapsing, it can cause changes. Discs loose moisture and become thinner with aging. When discs collapse, it puts extra pressure on the facet joints causing arthritis. I have this too because my C5/C6 had lost half of it's height to herniation, and I do get twinges of pain from facets when I'm turning sometimes.

The longer the fusion with more levels, the more stress that puts on the discs above and below the fusion. Surgeons don't want to cause other levels to have problems sooner rather than later, so they do tend to be a bit conservative on how many levels to fuse, and that is of course their professional opinion on what is best. As a patient, I understand wanting to get everything fixed at once and not wanting to come back for more surgery later, but that isn't always the best choice, and it is something to discuss with the surgeon.

The PA makes a good point of waiting at least a year before looking to a spinal cord stimulator. Peripheral nerves take a very long time to heal, and all the years of nerve compression certainly caused some long standing pain. No one knows right now how much your nerve pain will or won't improve. I don't think you'll know if you want this for a year or more. The peripheral nerves are able to regenerate very slowly. I had some pain with temperature sensitivity in my hand caused by an epidural injection in my neck that lasted for a year an a half before it went away.

I know you're feeling better since the surgery, and are looking for more improvement. At this stage, just be patient with yourself. Healing takes it's time, and you can't speed that up. You can do lots of physical therapy, myofascial release, and make sure your diet supports good health and healing with adequate protein and minerals for bone health. You are doing all the right things in being positive and excited about your recovery. It is something to celebrate. Believing you can achieve something is very powerful, and its a superpower that a lot of patients never realize they have. I am going to imagine you standing defiantly wearing a super hero cape. You can add your Karate black belt to complete the outfit!

(Imagine some dynamic super hero movie music here.)
Jennifer

Thank you Jennifer!

Complicated is my middle name 😄

Your explanations are very helpful!

Grand Master Ansei Ueshiro used to tell us sayings from Zen. His favorite? 100% patience wins 1000% of the time.

It is only 4 months, so I will maintain a patient attitude.

The assistant did mention that the myofascial therapy would break up muscle knots and I think that is happening. I have purchased almost everything that they use at physical therapy so I can do everything at home as well. I find that using a flex bar a couple of times a day definitely helps my hands. Each session I do 2 minutes each of bending the bar upwards, bending the bar downwards, and then twisting the bar in opposite directions with both hands. I'm also doing some gliding which adds to the overall effect. It doesn't last long, but it does make me believe that I will get there. My wife keeps telling me that I am the best healer she has ever seen and she doesn't know how my body does it. I just know I'm glad it does.

I nominated Dr. Celestre for Ochsner Health's Doctor's Day in March. He deserves recognition.

You should be nominated too 🏆