Marc:

I understand you don't like the UC system, but you may want to consider taking a look at Justin Brown @ UCSD. http://neurosurgery.ucsd.edu/justin-brown-md/

Anne

I've already considered Justin Brown. I'm just not comfortable with seeing a neurosurgeon who only does scalenectomies for this. I skipped Dr. Filler as well and Justin Brown seems to be along the same lines. It appears that Dr. Brown's team offers Filler's MR Neurography. The "The UCSD Center for Thoracic Outlet Syndrome" seems to be for marketing purposes as I believe the vascular guys are better equipped to dealing TOS than neurosurgeons (My TOS is vascular and neurogenic). Niren Angle was the chief of vascular surgery at UCSD until 2010. The fact that Justin doesn't have a vascular surgeon on his team doesn't add to my comfort level. I haven't found a single person online who has had surgery with Dr. Brown. If I was convinced I only needed scalenectomy, I would definitely see these folks as they are covered by my insurance while Dr. Filler is not.

UCSD Center for Thoracic Outlet Syndrome (TOS) and Upper Extremity Pain
Team members:

Neurosurgeon: Justin brown
Clinical neurodiagnostics: Geoffrey Sheean Intraoperative neurphysiology: Jeffrey Gertsch and the UCSD Interventional Neurophysiology Service
Radiology: Afshin Karimi (MRI of nerves), Tudor Hughes (ultrasound of nerves)
Pain medicine: Gregory Polston
Sports medicine: Natalie Voskanian
Specialist therapy for TOS: Carter McElroy
Basic science: Nigel Calcutt, Wendy Campana

Olecyn, did you ever follow up with these folks?

The LARGE Intelliskin arrived the other day and the fit is much better. Took it for a 10 minute test drive and had no vaso-spasms in my right hand. This was an immediate symptom I got while wearing the S3.

The Eve shirt is very long. I can't emphasize that fact enough, so if you are short it may be a negative feature for you. For me, it's perfect! The S3 came above my waist and the Intelliskin comes mid-butt.

I used it this morning to clean out the refrigerator and kitchen. Two tasks which require less than ideal posture. It feels good and brings me back to neutral when I'm done bending and twisting, but 20 mins will be enough for today as I feel some muscle twitching below my scaps.

I will be keeping it as a bottle of Sriracha chili sauce exploded all over the front, so it's now white with many red dots - don't think it meets Intelliskin's return policy anymore.

I'm glad the Large seems to be working out for you.

Re-posting this info into my thread for future reference

Hi I am new here but I have been reading your posts with interest. I am in the L.A. area. I have Ntos. I have seen dr. Williams at Kerlan Jobe who first diagnosed me ,Dr. Filler Dr. Carden and Dr. Jordan. I decided to go with Dr. Jordan even though he is not on my insurance and cash only. He was the most knowledgable most respected and most experienced in TOS. I had scalene block injections and botox injections last week. I feel like I was hit by a truck the pain was so bad for a week after. Now it is calming a bit and I am hoping I can do PT and strengthen the muscles without having to do surgery.I am also going to do myofacial release next week.But Dr. Jordan thinks I should see the surgeonsfor full recovery to be able to get back to work. I am planning to see Dr. Ahn who is in my insurance and Dr. Gelabart who is not. I am interested in the USCD center and am interested in Scelectomy without Rib resection as I dont have any vascular symptoms. Good Luck to you and thanks for any insight!

jkl, welcome!

Vernon Williams was also the Dr. who first diagnosed me. I was able to do the PT he prescribed to strengthen muscles and correct posture but in the end it made no difference. My posture is much improved but my symptoms are worse now. I think seeing Dr. Jordan is superior to Williams in regards to treating TOS. Dr. Williams didn't do much for me in terms of pain management.

Check and see if "Joyce N. Wilkinson, PT, OCS" is covered by your insurance - http://www.pogsonphysicaltherapy.com/contactinfo.html. I was referred to her by Dr. Gelabert and but unfortunately she doesn't accept my insurance. Other members of this forum swear by her.

Dr. Ahn told me he will perform scalenectomy without rib resection in some cases. You will have to endure his angiogram/angioplasty procedure to determine his surgical recommendation. I did not want my ribs removed, but Dr. Angle has convinced me otherwise based on his clinical findings (in a later conversation, Ahn admitted that would have likely been his recommendation as well). If not for Dr. Angle, I would be still be considering Dr. Ahn and Justin Brown at UCSD. I think you are on the right track with Dr. Ahn and UCSD.

If you are willing to go to UCSD, it won't hurt to consult with Dr. Angle. Get as many opinions as you can. www.niren-angle.com

Yes I am already seeing Joyce. My insurance covers 16 visits per year. She is good, but unfortunately so far it has hurt me more times than helped because my muscles are in such spasm. I just got the botox injections so I will be going back to her for the remainder of the sessions starting next week. After that I will be looking for a chiropracter or osteopath to help me with strengthening (hopefully).

Does Dr. Ahn have to do an angioplasty even if you only have neurogenic TOS?
Is Dr. Angle at UCSD? I have never heard of him.

Dr. Ahn has you do fluoroscopic angiogram/angioplasty before he recommends a surgical plan. He no longer uses scalene blocks or doppler ultrasound for diagnostics and indications for surgery. His logic is that the neurovascular bundle follows the same path so even though you don't have vascular symptoms he will find vascular constriction. He will then blow up the balloon catheter (angioplasty) to open up the constriction which will open up the path for the nerves as well. He says that this should give immediate relief for neurogenic TOS and let him know what surgical approach to take. His peers do not currently share his enthusiasm over this approach as it is an invasive procedure which may not tell you anything that other non-invasive tests do. I believe he is preparing a study and will be presenting at some vascular conference later this year. I ended up having MRI/MRA instead which Dr. Angle believes will show the same results minus the balloon angioplasty. Read through this thread's history to see more opinions regarding Ahn.

Dr. Angle studied at UCLA under Gelabert and Ahn then practiced there. He went on to be the head of vascular surgery at UCSD. He is now in private practice at St. Joseph's Mission Hospital in Mission Viejo. Since I have chosen him as my surgeon, of course I recommend you consult him for an opinion. I spoke to my own neurosurgeon, and he believes the vascular guys are best equipped to treat TOS and I agree based on my own research.

Since you believe you only have neurogenic symptoms, did you get the MRN (Neurography) study developed by Dr. Filler? If so, what did it show? I believe UCSD can perform these now as well. I once thought my symptoms were only neurogenic until my condition worsened and Drs. Gelabert, Ahn, and Angle honed in on the vascular signs. Eventually, I was able to psychologically accept that letting go of the rib was necessary.

I had a EMG/NCS several months ago by my original orthopedist. it came back abnormal but he was confirming a diagnosis of C6 raidiculopathy. Dr. J says it is flawed, I will ask him tomorrow what he means. i had a brachial plexus mri which showed neural edema and the scalene block which dr. j used to diagnose the TOS. i havrnt heard of dr. fillers MRN. he wanted to do the mri scalene block but it costs 3x what dr. J's cost $15,000and dr. J says that the MRI is more outdated then the Ultrasound anyway. Also Dr. F had many bad reviews and several people told me to be careful about using him. I dont know if anyone on this site had good experiences with him.
There is also something called a MAC test that Dr. Sanders espouses and I think there is someone at UCLA that does it.