Hey Shug - pls add me as well.

My symptoms really flare up when i crane my neck, forwards or downwards. I suspect my kyphosis adds to it as does the fact i had a whiplash injury. The ligaments may be lax on one side, forcing the levator and pec to constantly spasm in keeping my shoulderblades stable. That in turn swicthes off the antagonist muscles and fatigues the traps.

Hi,
I had tried the nortriptyline and yes it was one of the more effective drugs that I have tried but comes with nasty side effects. It's a dependency designed drug, you feel great initially but then require more to maintain that feeling. Eventually when i grew tired of being so dependant on the this med and decided to discontinue, I had no idea how addicted I had become. I felt like I had the flu every time I would try to discontinue and in the end it took 3 months and multiple visits to the Doctor and Pharmacist to wean from it. Be very cautious and ask QUESTIONS before taking it. Good Luck finding something that works for you.

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You can post the info links now, about the hormones/pain control, HCG, for future readers..

Here is the link on Dorsal Scapular nerve compression causing atypical TOS. It is from a doctor in China. I have never heard any TOS doctor in the United States even mention the dorsal scapular nerve being involved in TOS.

https://www.researchgate.net/publica...utlet_syndrome

Completely taking out the medial scalene to the nerve will relieve this issue. When doctors do the TOS surgery, they only partially take out the scalenes. They resect the middle/anterior scalene but don't take them all the way out.

Here are the hormone articles on HCG:

http://www.practicalpainmanagement.c...tment?page=0,2

http://www.painmed.org/2012posters/poster247.pd

http://painmuse.org/?p=2958



What is also interesting is that long term use of opioids will cause testosterone to reduce. If you have a family practice doctor - you can get a blood test done and they will tell you if your hormones are depleted. Most docs will just use testosterone. If you go to someone who is up to speed on hormone replacement, they will offer both HCG and Testosterone, testosterone, or HCG only. HCG will help with both muscle growth and nerve regeneration so IMO offers the best chance for pain control and possible reversal of neuropathy. It increases nitric oxide (helps bloodflow) and cAMP(tissue healing).

My testosterone was low so they decided to put me on testosterone replacement. I was on it for over 2 months and did not have any decrease in pain. I was just put on HCG every other day 2 weeks ago and this has been the only medication that has helped me (and I have been on a lot). It increases energy, lowers pain, and my sleep is way better.

Two of those links don't seem to be working so I will try them again...

Atypical TOS caused by dorsal scapular nerve compression:

https://www.researchgate.net/publica...utlet_syndrome

HCG for chronic pain study:

http://www.painmed.org/2012posters/poster247.pdf

Is this your primary care Dr that is giving you this treatment? I'm in pain management right now and I'd like to know if this is something that would help me.

Your story is similar to mine. I've been through 1 surgery and my post op summary said I had excessive scar tissue around my C8 and T1 nerve roots. I'm taking Lyrica, Robaxin, and Cymbalta right now for pain. This was prescribed after I was diagnosed with Brachial Neuritis, this episode kept me out of work for over 2 months.

I'm also taking an enzyme called Serrapeptase that supposedly works as an anti-inflammatory that can reduce scar tissue. I'm not sure if it's just snake oil right now or not.

My primary care doctor did the blood test that found my testosterone was low according to lab results. I'm only 31, so I believe my testosterone is depleted because of chronic pain (so did my doc). Long tern opioid use can also deplete testosterone. These hormones are vital for pain control. He put me on testosterone replacement for 2 months. I told him it wasn't helping and stated my case as to why HCG would be a better option to increase testosterone and possibly help with pain control. He was not familiar enough with HCG so he would not put me on it. I went to a new doctor that is up to speed on hormone replacement (another family practice doc) showed him my labs - he stopped the testosterone replacement and agreed with me that HCG would be a better option. He wrote an rx for 350iu every other day of HCG.

You will be hard pressed to find a pain management doctor that is going to write you a prescription for HCG. Hormone therapy is not there forte as it is too new/controversial. I would at least ask him about it, but don't get your hopes up. They usually don't know enough about it. You need to go to a internal med up to speed on hormone replacement, family practice doc up to speed on hormone replacement, urologist, or endocrinologist to get HCG. The only way one of these docs will write an rx for it is if your testosterone levels are low so you have to get a blood test done.

I took serrapeptase in a formula called vitalzyme for over 6 months. I didn't see any benefit in it so I discontinued. That doesn't mean it doesn't work, just did not for me. I also took pentoxifylline and vitamin E 1000 mg per day for over 6 months without any benefit. There were some studies that showed vitamin E/pentoxifylline can reduce internal scarring. I recently added vitamin E to what I am taking now because the nitric oxide from HCG ramps up bloodflow, combining vitamin E may work on the internal scarring. Here is my current regimine and why I am taking it.

-MetanX: prescription vitamin for nerve damage and to lower homocysteine levels (active vitamin B12, B6, methylfolate). I may just get over the counter version to lower homocysteine levels because its cheaper than RX and I have been on it for 5 months and haven't seen much benefit.
-Fish oil: 3 grams per day (anti inflammatory).
-HCG: 350iu injected subcutaneously every other day(nerve regeneration, pain reduction, increase in depleted hormones).
-Vitamin D: 5000iu per day(low vitamin d levels)
-TMG: 1000mg per day (lower homocysteine levels)
-Taurine: 3 grams per day (nerve health).
Vitamin E: 1000iu per day (internal scarring).

I used to take ALA and benfotiamine for nerve health but stopped due to not really seeing any changes.

I think it is vital to stay as active as possible without flaring up symptoms because of lack of oxygen flowing to muscle caused by adhesion/entrapment. I still believe there is a step by step process to overcome TOS:

1.control pain(meds)/stay active/increase bloodflow
2.remove adhesions/open up space for nerves to pass through (Tough to find a skilled manual therapist that knows complex cases of TOS).
3. Restore posture (Again, very tough to find skilled therapist's who work with complex TOS/nerve cases.
4. Strengthen muscles to restore any muscle imbalance that TOS causes.

Way too many therapists skip right to step 4 and further complicate matters.

I agree with you on all of that but the biggest problem is the adhesion part. Stretching/PT can sometimes just make things worse. That's why I was hoping the supplement route might help, like what you're doing.

I'm not much older than you (36) and I'm guessing mine would be low too. This neuritis episode sent my pain levels through the roof. I'll see if I can get some blood work done.

Thanks for the info...

I hear you, I've been to about 8 different physical therapists and 10 different massage therapists since my surgery 3 years ago. I have yet to come across 1 therapist in Michigan who has experience working on someone who has had surgery for Thoracic Outlet Syndrome. The search continues....

Didn't you say Thompson did your surgery? I actually have an eval with him next Wed to see if they have any ideas that would help. If I understood how the post op treatment worked correctly, after your surgery the physical therapists there work with you to come up with a program, right?

Can you tell me what your first eval with him was like? I know mine will be somewhat different since I've already been worked on though.