[QUOTE=tic2;941134]Tic2,

I think if it is vascular, which in your case it is venous, the report should hold some truth. With neurogenic TOS it's hard to diagnose with pictures but with vascular it is usually pretty obvious because of blood flow issues with compression. Mine was arterial and my MRA showed the fallout in my subclavian artery with compression in certain positions. Does that make sense?
Good luck and hang in there. What does Art think?

[QUOTE=stos2;941145]I need to go back and see Art. Yes your MRA makes sense to me. I am actually a chemical engineering professor with a PhD and have read and can read all my imaging films.
I have been studying TOS articles for about 6 years.

Art and James thought Collins was on the right track.

Thanks for your support. Happy holidays
Mary

[QUOTE=tic2;941154]Hi Mary, dont give up hope. see what dr gelabart and dr mckenna have to say.When do you see them? Also you might want to think about spending the money and see Dr. Jordan only because he is an excellent diagnostician and does not have any loyalties one way or the other. The initial visit was $618 and blue cross should cover whatever percentage coverage you have. He will probably send you to gelabart,Ahn or mckenna for opinions. The MRA shouldnt lie and I know Dr. Mckenna is a fan of them. .My experience is to get all the opinions you can and make your decisions after you find the dr. you most trust.
You know your body best and what your symptoms are!
Good luck and try to have a nice holiday!
JKL

[QUOTE=jkl626;941173]Thank you
Happy holidays too!

[QUOTE=tic2;941154]Happy Holidays to you too! Good luck in 2013 to all our members! Wish and hope from the bottom of my heart that you all feel really good and are steps ahead in your recovery in the new year!

How are you doing?
Just read through ALL your journeys, advice and the sharing. Thank God for people like you...perfect example of how I found my docs and referrals for correct medical help.

Ur story is parallel to mine seeing multiple docs before Dr Williams, the lack of return calls from other docs, the ER room, etc..He can diagnose but his protocol and lack of patient care is sad. Yes, Dr Ahn needs 50 lashings for his approach, surgical malfunctions and lack f honesty. However, we dont hear of the patient's who have been a success with him do we? Dr Gelabert, Jordan and even Justin Brown are educated TOS professionals for sure. Ando and Aston had a lot to learn about TOS when we connected and boy did Art learn quickly.

Keep me posted on your recovery and life with TOS. It is an unforgiving condition. And when someone like yourself shares their story it makes life so much easier for others

The RF Ablation procedure eliminated 70% of my occipital neuralgia but I developed severe spasms in the SCMs with pain radiating behind the ears into the temples and face. I was referred to a neurologist specializing in movement disorders to investigate potential cervical dystonia. He concluded that the tension was all myofacial and not dystonia.

Valium and Neurontin have been the only things providing relief (other than Percocet). I tried Baclofen but got no relief and had to return to Valium. My pain management doc wanted to try me on Suboxone and started me on a drug taper before starting the Suboxone. When I reduced the Neurontin I realized I was experiencing the same symptoms I had prior to rib resection surgeries. I returned to 800mg x3 of Neurontin.

I decided to see Dr. Sheldon Jordan since he understands TOS as well as other neurological disorders (most neurologists do not). Dr. Jordan believes I am suffering from TOS recurrence. This recurrence is a risk when the rib is resected transaxially and the scalenes are not fully removed. Dr. Jordan says sometimes the anterior and middle scalenes scar to each other, forming a noose around the plexus. Dr. Jordan has an EMG/ultrasound guided botox procedure to treat TOS non-surgically (sucessfully, I've spoken with a few of his success stories) but it does not appear that my insurance will cover it (I can't offered his cash rates). The procedure has to be repeated every 6 months and surgery may still be necessary.

I am going to have MRIs of the brachial plexus and likely have full supraclavicular scalenectomies and neurolysis with Dr. Angle soon. I think surgery is the best option for me since I bounced back so well from the previous procedures. I have to get better before our baby arrives in June!

good luck Marc, I hope all things go well. My 1st surgery was transaxially approach and had the 2nd surgery within a year after the 1st. My surgeon, Dr Clair said that a small portion of the 1st rib can not be removed from this approach and the stub can cause problems. I have had much better results from the 2nd surgery even though it has taken a long time.

Good luck!!

I have major scm problems too. Im pretty sure its what makes me feel very dizzy

Double post