Complete left side pain, from top to bottom.

Thank you again for sharing. I have not had a surgery for TOS yet or considered although I am considering scalene block or Botox injection to stop it contributing to body tightness from etc while addressing my cervical radiculopathy some how.
I am in Los Angeles and looked up MFR John barns and will try it soon.
Perhaps I should also apply at mayo Rochester.
I think my neuropathy is spreading to stomach now … I had a acupressure session in January and it feels like it did more damage on my neck nerves.
It’s great that you are at the point of managing it sounds like. I wonder when I will get there.
It’s getting harder to stay upright but it’s nice to be able to talk to someone with similar issues.
Thank you.

Have you been tested for small fiber neuropathy? It affects the heart. I had a one month holter monitor test.
It showed I was having bradycardia and tachycardia ( too slow/too fast) adding to my balance and dizziness. I feel it a lot of people do not feel the arrhythmias. The cardiologist told me everything was fine. Which I knew it wasn’t it felt like my heart would stop then jump start back really weird feeling. I went to my son’s electrophysiologist and he diagnosed me with cardiac autonomic neuropathy. As going through RN school I knew what it meant. Naturally, I told him he did not know what he was talking about and walked out. My neurologist said the gold standard for testing small fiber neuropathy was a biopsy in three different places and I told him go ahead. Needless to say I had to go back and apologize never so embarrassed. He looked at me and said that’s okay that’s how a lot of people react when we tell them they only have 8 years left to live. Arrhythmias and my blood pressure goes every where. I also have gastroparesis complements of the neuropathy, bladder, occasionally my eyes act up and kidneys problems.
I constantly have balance problems and dizziness part of the neuropathy.
Dr. Anne Oaklander (Boston I was referred to her) suggested I go to Baltimore to be tested for seronegative Sojourns. My eyes constantly water been diagnosed with dry eyes and dry mouth. I have six teeth that need crowns due to dry mouth. Pretty soon my whole mouth will be nothing but crowns.

For your "body tightness" I would try THC gummies 1st before I go to Botox to relax the nerves. I have been suffering for 20 yrs. now with CRPS and off all opiates except for Fentanyl Patch and using THC for the nighttime burning pain. They work GREAT. Sometimes I take a whole one and sometimes 1/2 of one. Just a suggestion. Gentle Hugs

@snowmass I don't know if TOS is ever resolved, but it can be improved. I have done PT with myofascial release since 2010. My hands used to turn purple or bluish and get cold. That doesn't happen anymore. If I get a neck spasm on one side, it can trigger TOS a bit and even cause a contraction in the side of my palm. What really helps a lot is riding my horse just at a walk and sitting up straight while I do it. That works all the core muscles that are supporting my spine, and it is easier to hold a good posture with a stronger spine. I have to do some strength work by grooming the horse, lifting the saddle, etc, and putting the saddle away in my truck when I'm finished and carrying it back into the house.

I've learned to pay attention to when I have tight muscles and do some self treating of fascia by stretching, laying on a ball, foam roller or use something in my hand to push to stretch the skin and hold it and wait for the fascia to unwind. I do a lot at home to self treat and maintain what my therapist has done for me.

Regular PT to strengthen muscles, just makes my TOS worse, and the key to improvement is more stretching to prevent it from tightening up. I also stretch out the scar tissue from my ACDF spine surgery that is located very close to where TOS compression is in my neck.

One option for MFR work would be to do an intensive week at Therapy on the Rocks (locations in Sedona, AZ and a Pennsylvania office) which is the practice of John Barnes and his employees. I have not done it, and there is an expense, but with several therapy sessions per day for a week or more, it may make a difference in faster progress.

Therapy on the Rocks Website. https://therapyontherocks.net/

Am I understanding that you did have surgery for TOS and possibly had scalene muscles removed, and afterward this seems to be increasing your symptoms? TOS can have scar tissue involved, and surgery creates more scar tissue. When my doctor talked to me several years ago about this, he said surgery for TOS does not have a good success rate and recommended against it with MFR therapy instead. If you have surgical scar tissue exacerbating your symptoms, MFR may be beneficial.

There are a couple chiropractors at Mayo listed as doing myofascial release in their rehab center in Rochester (if you search on Mayo website). You may want to look at Therapy on the Rocks for an intensive session as an alternative. You may not need any further consulting to go there for therapy. I don't know which of your options would be more cost effective or your best choice. I was evaluated for TOS in a vascular lab at Mayo when I was there consulting for my spine surgery. They had to decide what was the bigger problem in diagnosing where my symptoms were coming from and I already had a diagnosis for TOS and cervical stenosis. My Mayo spine surgeon signed my scripts for physical therapy for my TOS for several years.

I hope you find an answer that improves things for you. It sounds like scar tissue is causing a big problem. You may also to look at the facebook page of https://www.facebook.com/kjetilMSKN He is the author of the MSKneurology.com .
Jennifer

Hi Jennifer, I was wondering how long it took you to be seen at Mayo Rochester? I may go to Rocks for some sessions of MFR at the end of the month, not the intensive thought, it was quite costly ( 2 weeks of 3 sessions per day straight)
I feel like i am similar to your case ( cervical stenosis on the left, C5 disk bulge and TOS on the right ) with late addition of pain traveling up to my head. I really hope I can be seen at Mayo soon.
Thank you,
Jae

Please describe the pain type? Is it burning or stabbing or constant. Want to comment but not sure without a better description of pain type.

Thank you so much everyone for chiming in. What a vast amount of conditions out there. My goodness. It could literally be anything and everything. For those who have asked, I have not had any neurological testing or diagnosis yet. It may be time. For now, my doctor thinks it is just a Sjogren's flarup. All my blood markers seem to lead that way. I am happy to accept that but I'm paranoid what if it's something else more serious, that's sitting there un-discovered. I don't want to discover it too late. I will try to push for more testing as far as insurance can cover. And I guess I can't do much more than that.

Thanks again everyone.

I know what you mean. I was also and still am some times scared whenever I get new weird symptoms like cold bruised sensation that runs thru whole body and weak feeling walking perhaps due the fascia pull. It seems there are so many unexplained symptoms that Drs just don’t know about. But I am thankful that it’s not worse than what I have now and there are meds that can stop the pain signal so I won’t go crazy. Hope you are well today. Jae