I had the MAC test by Dr. Machanic (sp?) in Denver at Dr. Sanders' request. Then went on to have pec minor sx -- to no avail. At the end of the day, TOS is hell and one has to decide if they will take the leap of faith and have their rib removed, or deal with pain management for the foreseable future.

Nospam,
can you recommend a good pain management doc in the OC who understands TOS and doesn't have a problem with valium?
Thanks

Thoughts about Dr. Ahn:
He has no problem experimenting on people and I'm glad nospam came to the conclusion he did. I have read that he used to do sympathectomies on people with sweaty palms and armpits (hyperhydrosis) who just wanted to sweat less. Now those people can't thermoregulate and are in constant pain.

That being said, he is willing to try new things in a continual effort to find something that works --- with a high success rate. I hope he is on to something with his diagnostic angio. After my MRA, Dr. Collins told me: "you compress a nerve, you compress a blood vessel".

If he is having such good results opening blood vessels during angio, why doesn't he just stent them. I have read of stents being used for tos but the stents broke because the compressive forces were too great. Also, the stents travel because veins get bigger in the direction that blood flows. I hope he can invent a stent that overcomes these problems so the need for tos sx is greatly reduced.

My guy is Neil Butani - http://butanipainclinic.com/contact-us.html

One of his specialties is addiciton, so he will have a discussion with you regarding the amount of valium you take daily. He is hyper vigilant regarding your drug regimen.

Butani is an amazing doctor and person. I could write a book on what he has done for me and my family (my father and aunt suffer from hydrocephalus). His sister is amazing too (she is a cosmetic dermatologist who shares the practice). He's often running late because he is conscientious to a fault and never shortchanges patients in the time he spends. Just be prepared for that if you choose to consult him. He's totally worth the wait. He's not a TOS specialist like Dr. Jordan but he is a pain management savant IMO.

Have you had a MRI of the C-spine? Cervical radiculopathy complicates TOS. Just make sure you are fully investigating both the C-spine and the TOS (which I don't feel Vernon Williams fully did for me).

Did Dr. J's scalene block help you? What did his ultrasound show?

yes I had an MRI which shows moderate C5-6 stenosis ,bone spurs and narrowing last july and i was treating that for 7 months with pt,chiro,acupuncture.I saw several dr's for that too, but I wasnt convinced I needed surgery or a spinal epidural .When i finally got the tos diagnosis it made more sense to me with the symptoms I have. if these treatments fail i will re-explore that ave. before doing TOS surgery. All the neurosurgeons recommend disc surgery,and The TOS dr's dont think it is my disc, some say its probably both but more TOS. Dr. Williams ,Filler and Jordan are all Neurologists too and dont think it is my disc.

The Scalene block didnt help only right after, its just a diagnostic to see what muscles to put the botox in. i will ask him more today when i see dr. j., so far the botox isnt helping much. Just Number feeling and more bound up. Resting maybe a little bit better than before, but as soon as i start using my arm,it starts to hurt.having a hard time even typing.1ll keep you posted! Thanks

Keeping my elbows at my sides at all times has made a huge difference for me (driving, typing, sleeping, etc.). The IntelliSkin garment is also a great reminder and help keep flares at bay - www.intelliskin.net

i have 2 $99 posture shirts that dr williams rec. is the intelliskin better?

I received the results of my MRI/MRA/MRV today. The test didn't show any evidence of brachial plexus or arterial compression, but does show narrowing of the subclavian veins in the hands-up position (left greater than right, complete blockage on the left). Not surprising except for maybe the venous compression which I had not suspected.

I feel like the MRI is very limited in the fact that the hands-up position achieved in the MRI machine is not one which reproduces my arterial or neurogenic symptoms. The EAST, "Stick-em-up" test (http://www.nismat.org/ptcor/thoracic_outlet) most quickly exacerbates my symptoms. With this test, the symptoms actually are worse on the right than the left even though the left is generally worse in daily life. I am more convinced now that Dr. Ahn's angiogram is a more effective test than the MRI/MRA/MRV since he can maneuver the arms into more provocative positions than can be done in the MRI. I still believe that his testing would simply confirm the clinical exams (which is why I'm not rushing back to Ahn for the test). Perhaps as higher resolution open-MRI becomes more available the MRI testing can be further expanded (as MRI is less invasive than the balloon angioplasty Ahn uses).

I am moving forward with rib removal surgery with Dr. Angle on April 19. I hesitate to use the term rib resection as he stated his goal is to remove 100% of the rib unlike some others. He will clip the anterior and middle scalenes and leave them to retract/atrophy. We are considering some new, advanced techniques to minimize scarring/adhesions. I'll post more about them depending on what Dr. Angle ends up utilizing in the surgery.

I don't know. I have a feeling they are quite similar. How do you like the AlignMed Posture Shirts (I hate their S3 brace)?

I believe I am the one who first told Dr. Williams about the Posture Shirts. Unfortunately, we weren't able to get insurance to pay for them. I went with the IntelliSkin because they have the sleeveless versions.

I like that Ahn is doing the angio because he can manuever the arm much more. It is invasive and that is a drawback, but if time proves it to be a more effective diagnostic aid and leads to higher sx success rates ---- then great.

Nospam, I respect that this is your thread. If there is anything you would like me to post elsewhere, please let me know.

I saw Dr. Niren Angle today based on your reviews. He eased my fears about sx. He does axillary approach and focusses on subclavius, ant, and middle scalenes, and removes as much of the rib as possible (that is good because i've heard of probs with rib stumps). He said Dr.'s have tried to use stents but they tear apart because of the mobility and compression in the area. He said he did the sx on a navy seal and he went back on duty. He also said scar tissue formation after sx wasn't common (in the sense that it causes similar compression as before the sx). For now, I'm going to continue trying/using drugs.

Please keep us posted on your sx. I hope you have a great outcome. I will be anxiously waiting to hear how it goes.