My husband says "This isn't an episode of House, damnit!"

I know that's what other people feel like... that's what I feel like too.

Sorry... I have to rant. Just got out of my 2nd NVC test and don't feel like I am any further that I was 18 months ago when a dr said hmm you may have TOS, but I don't treat that... I'm a back doctor. EVERYONE is a something else doctor......


I've had Nerve Conductivity Studies done 2x now. First said no compression at ulnar or median nerves. This 2nd one says yes to ulnar nerve now, but no to neurological TOS. BUT unless I'm reading all these websites about TOS completely wrong, TOS can cause problems with the Ulnar nerve... ie: ulnar nerve is a SYMPTOM not the PROBLEM.

So.....

• Orthopedic diagnoses TOS after strongly abnormal vascular dopplar test and tells me to go to Vascular Surgeon.
• Vascular Surgeon #1 (name is listed in this forum under Houston) tells me go to PT or we can do surgery if that's what needs to be done. Says that neck pain/headaches is a common symptom of TOS.
• Vascular Surgeon #2 (also listed in this forum under Houston) tells me to go a neurologist and to get all my tests and send them to me and he'll look at them to see if he'll see me.
• Family Dr (has never seen anyone who actually had TOS ... and goes "Ooohhhhh that's wierd" when doing the modified Adson test... is the ONLY one to give me muscle relaxers (FLexeril), but ONLY after I called his nurse 2 days after my appt and TOLD him what medicine I wanted to try since the Valium he prescribed didn't do squat.
• Neurologist #2 tells me to go back to Orthopedic or Vasuclar Surgeon.
• Orthopedic & Family dr will order the MRI for c-spine, rt shoulder (but neither really know what to do to treat me)
• Neurologist # 2 assumes I'm going to see Neurologist #3 for neck/headaches (I was referred to Neurologist #2 OR #3, not both).
• My husband thinks my physical therapist is "googling" his way through my treatment.

Grrrrrrrrrrr these doctors .... I work 10 minutes from the Texas Medical Center... how can there be noone here that can treat TOS?!?!

I don't feel that I even have a doctor now since my Orthopedic essentially refered me off. My family Dr is cool and will prescribe stuff till I find someone who will treat me but has never seen this.... at least he ADMITS it... which is more than most.

So, who do you see between the diagnosis and surgery (if needed).

Dr. Harold C. Urschel Jr. located in either Dallas or Houston is a world renown expert on TOS .

Colleen- i'm sorry that you're getting the doc runaround.... I went to 2 or 3 docs, but got lucky and wound up referred to a Pain Mgmt Doc (who's also a Neurologist). Several people around here have also been referred to Pain Mgmt Docs.... before, after, and between dx and surgery. I would see if you could get referred to one that knows about TOS, and hopefully he could help out. One with PT on-site would be great- you don't want or need at PT that doesn't know what they are doing working on you.
sorry for rambling, and hope i made some helpful sense.
-dabbo

my new Drs office is Osteopath based - actually daughter & I see the RNLP but she seems to be well versed on the whole body, alignment and such also.
I haven't had to see her for my TOS stuff yet but I think it should go Ok if I ever need to.
She & the on site PT did well for my daughter- when she was having some back spasms.
[D.O.s bring something extra to medicine:

* Osteopathic medical schools emphasize training students to be primary care physicians.
* D.O.s practice a "whole person" approach to medicine. Instead of just treating specific symptoms or illnesses, they regard your body as an integrated whole.
* Osteopathic physicians focus on preventive health care.
* D.O.s receive extra training in the musculoskeletal system-your body's interconnected system of nerves, muscles and bones that make up two-thirds of your body mass. This training provides osteopathic physicians with a better understanding of the ways that an illness or injury in one part of your body can affect another.
* Osteopathic manipulative treatment (OMT) is incorporated into the training and practice of osteopathic physicians. With OMT, osteopathic physicians use their hands to diagnose illness and injury and to encourage your body's natural tendency toward good health. By combining all other available medical options with OMT, D.O.s offer their patients the most comprehensive care available in medicine today.

If you are not seeing a D.O. and would like help finding one, you can search our database to find one in your area, or call (866) FIND-A-DO. ]
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I went to a Physiatrist but he didn't officially call it "TOS".
- his head PT guy was the one that did the actual in depth evaluation
- the Dr did the EMG/NCV test {normal} & ordered the MRI & looked at it {normal for my age}
http://www.aapmr.org/condtreat/what.htm

Hi,

This is exactly where I am at in Australia! I have seen so many Dr's who just refer me on and now I only see my local GP for medications that I tell him I need. He hasnt seen any1 with TOS before and just fumbles his way thru it with me. I have disc issues with my neck and I just go from one specialist to another to discuss who can do what and who should do what first. It's crazy. Even with my Doppler studies I seen a Dr, for my insurance claim (my side, apparently) last week who I seen write down TOS? what is the question mark all about? AHHHHH. I could scream.

Ozzy

Thanks everyone for the feedback. Yea, I understand the "tos?" also. Doppler shows total occlusion of my right extremity in all positions but the neurologist Friday said "possible tos".

I've talked with Dr. Urschel's office. He is in Dallas, which isn't too bad of a drive from Houston. He is not on any insurance plans as in-network though. If I went to see him, it would end up being out of network. I think it would be cheaper to fly to Denver or wherever than see someone out of network.

I've seen Dr. Azizzadeh (surgeon) and have called Dr. Noon's office (another surgeon. Dr. A was a little too quick to cut for me. I don't know how Dr. Noon is yet... I'll have to drop all my records off for him to review before he'll even see me. I don't think he treats unless he's going to do surgery. I'm not ready for that yet. I just want someone who can manage my meds (my gp will but he's never see this), and someone who can refer me to a PT that will help and not cause more damage.

I went to my PT last friday and realized that with his "first rib mobilization", he was pressing on my upper chest (just below my collar/sholder bone the first couple times. This last time he was pressing on the top of my shoulder. I even asked him about where he was pressing and said "well isn't it here? (indicating the place he was pressing the first few sessions)". He said no, that you wouldn't want to press there cause you could press on the artery more. I KNOW where he was pressing. It felt bruised for 2 days afterward. So he was either pressing in the wrong place my first couple sessions or he is pressing in the wrong place now. Where he pressed Friday hurt, but not the bruised feeling for days like the first sessions.

It's so frustrating. I've called so many doctors and most are like "huh?". or "only if it's neurological"... "only if your wanting surgery now"... no clue who would even say "only if it's vascular". I haven't even found the doctor that would say that one. I guess tomorrow's calls will be for a physiatrist or osteopathic dr.

Colleen- Sorry (again) to hear about your dealings w/ the docs... I like Jo's idea of an osteopath. Like many others here, I would be wary of a new doc that wants to cut right away. Good luck with the phone calls on Monday!

My concerns with both of the vascular sugeons that you have seen is that even though both are willing to cut.....but not help with the meds, the follow up, getting the right PT, etc. You will need life long management of this, irregardless of if you have surgery and it doesn't sound like either one of them will be a help in that department.

I had a similarly frustrating time getting a dx of TOS. A WC doc told me I had it, but obviously could not treat me for it. I got the "it's all in your head" treatment from the docs I could find. I called a vascular surgeon mentioned at a TOS website and begged for help. He and his team did a very thorough eval and made the dx, then he sent me to a neurologist (who would follow me pre and post op if I needed surgery) and a PT very skilled with TOS. As it turns out, my pure TOS symptoms decreased after myofascial release with the PT and I don't need TOS surgery. Now those symptoms come back when I have increased neck pain from cervical radiculopathy (maybe scalenes spasming ?) because I have double crush problems and RSD . So, if I went to one of those surgeons you found, I would have had major surgery and would still be in the same boat that I am in now....or worse if the RSD got worse.

Could you call the "Denver 3" and ask if they could refer you to a neurologist and PT in your area ? Maybe even fax you recommended PT treatments ?

That is exactly my concern. Noone seems willing to manage this unless I want surgery and those are the 2 doctors that I can find who are listed on websites as treating TOS in Houston. The vascular surgeon says there is neurological component and the neurologist says there isn't because my EMG/NCV only had a slight abnormality at the ulnar nerve (which is, according to him, not related to TOS).

Are the "Denver 3" the doctors at the Vascular Institute of the Rockies (Brantigan, Synn, & Annest)? I was actually considering flying to Denver for a consultation since they seem to actually treat this and they accept my insurance.

When I was told I had to have rib resection surgery I consulted with a very well respected Orthopedic surgeon in my area whom I have trusted with my child and my husband (the NBA and US ski team trusts him too). I cant say enough good things about this man, he knows his stuff! Anyway, I think so highly of him, that I called him to see if he would do my surgery. He said that he would not do it because TOS should not be treated by Orthopedic surgeons (they do joints, ligaments, tendons, etc.) and told me to stick with the specialists in Denver and that is what he would do if he were in my shoes...
Just food for thought...