Spoke with Dr. Sanders Today for 30 min on phone
 

Wow! So for those of you who read my threads I am pretty sure I have arterial or venous thoracic outlet syndrome. My circulation to my right hand gets cut off and the reason I believe this is because in certain positions it feels like a blood pressure cuff is on my arm because my veins distend and pulsate. It is only one hand and it is positional. I am in the middle of changing health insurances because I want to see Dr. Brantigan in Colorado. I dont want to mess around and go to someone who will perform surgery and mess me up more than when I went in.

My mother emailed Dr. Sanders and he got back to her immediately and told me to call him. Well, I did! He got on the phone and was so incredibly nice. He explained to me about TOS and said he does still take patients even though he is over 80 years old! He said he doesnt do surgery; however, he is in the room with Dr. Amnest who he explained is very good and does the surgery. He said Dr. Brantigan and him differ because Dr. Brantigan usually removes boney structures and he removes muscles. Dr. Brantigan and him both perform physicals and that is how they are able to diagnose TOS.

That is hard to believe that they are able to tell me where the compression is by a physical. They do not use ultra sounds because he mentioned that everyone may have a little compression when raising their arms and that it isnt the most accurate test. He did mention venogram where they put the catheter inside to take a look see but the physical exam will determine if I have something wrong.

Has anyone seen Dr. Sanders or Amnest? Is it worth changing my insurance plan to see a doctor in Colorado (whether its Brantigan or Sanders) ? I explained to him that I am very concerned about having a stroke because I have right sided headaches in my temples and right neck pain that pulsates and is deep.

He explained that arterial or venous TOS usually dont cause headaches in the temple and it usually forms in the back of the head. He was leaning towards that I do not have arterial or venous TOS. But how can this be? I am sure that something is cutting my circulation off to my hand. It turns like a prickly red and he mentioned that if it turns white than that infers ATOS/VTOS.

He also mentions that he does muscle blocks which ive read and learned on here are painful and a waiste of time?? He thinks I have neurological TOS but I am not in pain and honestly if I did I can live with it because that is the least of my concerns. My concerns are blood clot and stroke.. He explained that its rare and only 1 out of 10,000 - 100,000 people get that.

I realize I have focused on Dr. Brantigan so much that I never really researched these two other doctors that from what I hear are the best of the best?? Can anyone tell me about these doctors and if theyve had surgery from them? Anything at all will help? What I thought was amazing is that he wants to see my chest xray to see if I have an extra cervical rib. After speaking with him for 30 minutes over the phone I got the impression he really cares and enjoys what he does since hes over 80. Very nice man!

I just wanted to mention that I used to have the "turns white" and now after much self care, chiro and PT, I instead get "prickly red" with bulging veins. My interpretation is that I had ATOS (not enough blood getting in) and now have VTOS (pinched veins traps the blood in the arm). I'm able to reduce my VTOS symptoms by 80% or more by shoving my first rib down.

The VTOS also seems easier to endure than the ATOS. Maybe that's because it's easier to fix and/or because with ATOS you are looking at a compression closer to the heart.

I'm continuing with the conservative approach, so don't have much to say about surgeons.

Chroma- thank you for always responding to my questions. It means a lot to know someone is there to listen and who is going through a similar situation. Thank u ;-)

You can also do a forum search for older posts with mention of Dr. Annest & Dr. Brantigan.
http://neurotalk.psychcentral.com/search.php

I have ATOS and my hand turns white as soon as I raise it. I was checked with ultrasound as well. When I use the arm extended or overhead, I get a woosy feeling followed by dizziness.

Scaredsilly,

Based on your previous threads, I understand you live in NY. What was the result of your appointment with Dr. Roscoe?

Flying all the way to Denver and changing your insurance just doesn't seem worth it to me based on your symptoms. While the older posts in this forum are definitely Denver-centric, all of the TOS expertise does not only exist in Denver.

If you are worried about clotting and stroke, you can definitely get that investigated locally as any descent vascular surgeon should be equipped to deal with Vascular TOS and perform a doppler ultrasound as well as order an angiogram/venogram for you (I would not delay). Flying to Denver for this is unnecessary in my opinion.

If I were you and lived in NY, I would consult one or both of these:

Dean Michael Donahue, MD - http://www.massgeneral.org/doctors/doctor.aspx?id=16342

Julie A. Freischlag, M.D. - http://www.hopkinsmedicine.org/surge...lty/Freischlag


I hope you continue to post and respond to the questions you are asked. I've noticed that you haven't always responded in the past when follow up questions are asked of you. 2-way participation is what makes this forum so useful.

I should add that my understanding is that vascular TOS almost always requires surgery (not conservatively treatable) and that surgery for strictly vascular TOS is highly successful (>90%). I have both neurogenic and vascular TOS, (more arterial than venous) on both sides and will likely have surgery within 1 month. My non-medical opinion is that if you have arterial symptoms you may have some neurogenic symptoms as well. Nerve pain is just difficult to identify sometimes. Here is a good diagram of the thoracic outlet space to illustrate.

http://my.clevelandclinic.org/Publis...tlet_space.jpg
http://my.clevelandclinic.org/disord..._syndrome.aspx

Have you looked into this guy at NYU?

Dr. Mark A. Adelman
http://www.med.nyu.edu/biosketch/adelmm01
http://cvi.med.nyu.edu/about/our-doc...k-a-adelman-md

Thread: Recommend a Dr in the Northeast?

Thanks for advice ! Even if I go to Donohue or Julie I would still have to change health insurance. I heard conflicting reviews of Adelman. I'm afraid if I don't go to somekne exoeriemced i wjll end up worse then how.I am now. I can get those tests done here but the surgery I think its worth having it with someone reputable.

Apparently people from all over the world go to Denver. They usually fix other surgeons mistakes there. I'm very conflicted. Idk what to do :-(

Scaredsilly -- I came across one of your posts (concerning having had a number of CT scans by age 26) from a Google search. I'm 26 as well and am going through a bit of anxiety over the same issue.

I don't mean to hijack your thread, but I don't believe I can send you a private message on this forum(?).

I've done (a stupid amount of) research on the issue of long term risks from CT and was hoping we could "compare notes." I don't speak to many people about my health anxieties, so it's somewhat comforting to know that there's someone my age out there who can empathize.

If you are going to Denver, might as well see both Brantigan and Annest (I like Brantigan from my research).

Maybe you should consider St. Louis as well to see Dr. Robert Thompson - http://surgery.wustl.edu/tos/TOS.aspx

I can't see ALL those doctors. I'm wondering what anyone else would do or has done? If you had a possibility of have atos or vtos would you travel from new York to Denver to be in experienced hands ?? Switch insurances ? Here's the thing about my insurance. I've been paying out of pocket anyway so my new insurance is about 10-20 dollars more a month but I have a 1200 dollar deductible. That's the only difference. It's not like I was getting insurance from my job and decided to get out of it and pay for new insurance. My job doesn't offer health insurance until the end of this year. What would you do ?I'm curious.

Would you risk another Dr ? One that doesn't perform half as many surgeries as the Denver doctors ?

If I recall from past threads, Brantigan & maybe Annest also prefer to do their own testing, or have it done by someone they know nearby in Denver.

If you are thinking of going to either of the Denver docs or any of the big name TOS docs, you should contact them about testing etc, before getting a bunch of tests done at home and then having to redo them in Denver.

I think others have sent a packet of what testing, dx's & sx's etc, they have had so far for the doctors to review and they will contact you with what they think.
But contact them and find out more details on how they usually proceed with long distance possible surgical candidates.

You should add up the costs involved too - plane fare, hotel/motel, meals, taxi..
And ins may require a surgery like that to be authorized, unless a doc says something is serious/life threatening, it may be considered elective.

R u in L.A.
 

Hi everyone,
I have been suffering from chronic, painful, violent muscle spasms, that stem from TOS. I have been here a while now and have made a few friends. We have all seen the same Dr.'s in the L.A. area. I was one step away from a surgery and Dr. Sheldon Jordan saved me! I had seen him previously and had Botox injections, but that wore off on me rather quickly. Dr. Jordan has a new machine called Mc Rf. It's radio frequency, that penetrates the skin and stops the underlying muscle spasms! I have not felt this type of relief ever. Feels like my old self again.I was unsure about the procedure and was Dr. shopping. Even Dr. Hugh Gelabert at UCLA said that Dr. Jordan was a God at helping people who are suffering from TOS. I was trying to find a Dr in my network... Insurance has been absolutely horrible to me about this condition. They don't understand it. Please feel free to ask me anything about it or do yourself a favor if you are suffering from TOS. Go see Dr. Jordan!!!
Best, Mitsy

I have to disagree with nospam: going to Denver is TOTALLY worth it!!! One should never assume their health/body "isn't worth it". I have seen Dr Annest, traveled from Florida to have 3 surgeries with him and his associate Dr Nowak. FYI, Dr Brantigan is close by - you absolutely COULD see both Dr.'s. They are used to setting up/coordinating appointments for out of town patients.

Don't do yourself a dis-service Scaredsilly. You ARE "worth it"!!!

my 2 cents,
Anne

PM me or search my threads for more info.

I agree completely with nospam's comments. He/she was not in any way implying that Scaredsilly's health "is not worth it." He was simply advising that Scaredsilly take a measured and rational approach before flying halfway across the country, and spending hundreds, if not thousands of dollars unneccessarily. He is absolutely correct--any local qualified vascular surgeon can prescribe an arteriogram and/or venogram (as I had done), which is then performed by a radiologist, in order to address Scaredsilly's fears of stroke.

Please understand--I am not crticizing Scaredsilly for being panicked, because I was the same way at one time. However, I agree with Nospam's comment about Scaredsilly posting and then not responding to follow-ups. To be perfectly frank, that is not the most courteous way in which to ask for advice in such a forum, where so many members are so generous with their time and jump in to give advice to anyone who requests it.

I understand that Scaredsilly is anxious and fearful, but I've seen her post new threads in this forum multiple times that are very similar. They usually say that she is scared to death that she will have a stroke and that there are "no good doctors in New York." I myself have responded with advice and comments, including my disagreement with the lack of any good TOS doctors in New York. We also have excellent TOS doctors here in the Washington, DC area. Then there's Johns Hopkins in Baltimore, Washington University in St. Louis, the Cleveland Clinic in Cleveland, Baylor University in Texas, and many others.

I know that in the case of Dr. Donahue, he has developed imaging techniques that are unique to his practice, so you would have to travel to have to see him to have these performed.

Jmax- Wow! That was out of left field. I don't even know what you're talking about and in regards to my posts that you seem to know too much about but hardly respond is that this was about Dr. sanders that i spoke with. Some posts are about health insurance, yes I do have an underlying fear (as do the rest of us or we wouldnt post on here ) however my theme of each thread is different. I and courteous to people who write me and respectful. If you have an issue with my threads then please take it up with me privately then blasting me publically on here. Please stay on topic. You have a choice to respond on my threads and to respond with a remark like that is a waste of time and out of line. Next time have a little more respect and try to understand my fears because I thought that is why we are all on a support group website and to be honest your not being very supportive so ignore my threads if they irritate you and keep your opinion to yourself regarding replies. I speak to a lot of people privately on here and respond that way.

I always thank people for their advice and take it into consideration. I've done tons of research and chose to pick specialists. I'm 26 years old and have a very hectic schedule and can't even get to a doctor right now. I am probably going to Denver because of their experience and I see nothing wrobg with that. I know too many people who had bad outcomes of their surgeries out of ny.

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