looking for treating doctor
 

i know that many on this board recommend seeing thoracic surgeons but i am presently seeking a doctor to prescribe meds and treatments in conjunction with a non-local thoracic surgeon. i haven't had luck finding a knowledgable neruologist and would like to find out what kind of dr others see successfully for this. (physiatrist, neurologist, ...) I am in a new location and there are no rec. drs on the stickies here and i've hit a standstill in asking for referrals. i will also need a PT post surgery and would like to find a good in a land where TOS doesn't seem to be well known.

(today the most recommended neurology group reported back to me that none of their many neurologists knew much about TOS but any one would see and then refer me out to an orthopedist. orthopedist?? geez

It's difficult to track down a knowledgeable dr sometimes. {OK often LOL}

I usually suggest for finding local help - to call or stop in at phys therapy places - they know which Drs are referring for what conditions.
If you stop in when they aren't busy you will have a better chance of getting in depth answers and suggestions.

I went to a local top ortho and he was very nice but not much help at all for my RSI/TOS problem- he did fix my knee very nicely {minor surgery}
I think unless you have a bone, ligament or joint problem they usually aren't too interested. {unless a particular dr has interest in solving/learning about unusual conditions}

I found this link -American Academy of Physical Medicine and Rehabilitation
http://www.aapmr.org/condtreat/why.htm

American Osteopathic Association
http://www.osteopathic.org/index.cfm?PageID=ost_main

MedlinePlus provides links to directories to help you find health professionals, services and facilities. NLM does not endorse or recommend the organizations that produce these directories or the individuals or organizations that are included in the directories.
http://www.nlm.nih.gov/medlineplus/directories.html

Anesthesiologists who are certified in Pain Management are usually more knowledgeable about pain syndromes such as TOS and RSD etc. than most other Drs. In my experience, older neurologists at hospitals connected with universities have more understanding (and BELIEF) in TOS than younger Drs, who seem to have very LITTLE in the way of education about it, and often are skeptical of the dx, even in the face of positive test results and other MD's opinions.

My P.M. Dr has a private practice, others are associated with pain clinics. There are good pain clinics and there are pain clinics with an agenda - be careful when looking at pain programs to find out what the philosophy behind the program is. I attended a day pain management program that I thought would either help reduce my pain level, or show that I did indeed need surgery. What I did not know was the MD ( a neurologist) running the program was vehemently AGAINST long-term narcotics usage - for anyone, regardless their pain or condition. Obviously, he was not licensed by the American Pain Association or similar organiztion.

You may also want to call around to vascular surgeons, who may have some familiarity with vascular TOS - but their egos may be bruised since you will not be letting them do the surgery.

You might try calling Mayo's and asking for some names of Drs in your area, although Mayo's itseld has not had good feedback from TOSers who have made the trip there. They may be able to refer you to someone closer though.

Just some thoughts.

Best of luck!

beth

i was dx'ed by an ortho, but he quickly sent me off to the neuro. are any of the neuro's in the local group also certified in Pain mgmt? My neuro is both, and I find it to eb a good combo.

Also, as Jo pointed out, osteopaths seem to generally be knowledgable re: TOS, or maybe are there any facialities or group that treat RSI's (hand clinics and the like?)

just thinking out loud.

johanna

Fern,

we really need to know your area.

If you don't want to post it, maybe PM one of the gals here like Jo or Beth or whoever and see if they can help you in your search.

The only nice thing about posting your area is two-fold: someone may already know a good pain mgt. doc or treating doc, which is how I found mine through HopeLives, and, you may find another TOSer in your area whom you can meet in person and really forge a good friendship to fight this monster TOS...boy, does a in-person meeting really help!!!

Take care.

thx everyone for your suggestions.

yes, Mayo is a decent suggestion for their pain contol pgm but i need to find a treating doctor local to the twin cities or metro area that could suggest the best PTs, manage meds, etc. i will phone to see if Mayo can advise. and yes, I have to say the more I search, the more i find bad experiences for surgery TOSers at mayo.

btw I came across this site when searching and you can see that this poor victim had their lymph system damaged during a Mayo surgery-- http://www.shoulder1.com/forum/messa...&enterthread=y
btw the bottom post is by Clair Davies-- www.triggerpointbook.com

Yes, there are 2 other TOSers in MN and wildberry did suggest a neurologist; i have really good insurance but this dr isn't on my plan and requires $750 cash up front for the 1st visit and $270 for addl visits. I've been unable to work for several years now and if I had that extra cash I'd use it for body work. I don't have the best feeling about this doc; when i asked for the name of a PT that works w. TOS he would not provide any suggestions w/o a visit.

I have to say it can be so irritating trying to find useful assistance in the medical field; i had one doc tell me that all people w. chronic pain have "learned helplessness" and choose not to get better. another told me i had bursitus in both shoulders as opposed to TOS; he insisted that I must have cortisone shots in each shoulder before leaving his office. at least i was savy enough to say let me think about it as an escape route. And i have found that a little TOS knowledge can also be a bad thing. another doc told me i could correct TOS by learning to not do chest breathing; this was after Edgelow told me I had become excellent at his diaph. breathing. and of course the docs that told me i'd be 100% better if i weighed less; and these are of course the ones prescribing those drugs like amitryptolene that cause weight gain.

my pursuit continues so any add'l suggestions appreciated.
thx! & sorry for the vent

Wow - you have been on the 'round the docs merry...

Having gained and lost 60 lbs., (due to Lyrica), the weight had no effect on the TOS pain.

And the "learned helplessness" - so for the first 42 years of my life I was amazingly not helpless, forged ahead on my own in many areas of challenge, but within a year turned helpless? Sure doc. What a jerk!!!

And yes, any doc that won't give a simple referral without a high-paying visit has his eye on the balance sheets more than his patients - or at least his mgr. does, and that means the same as far as supporting care to me.

Actually, Fern, yours is a great vent. Haven't heard these gems before!

Best of luck to you.

just for reference- even here in LA, a top out of network TOS doc is $450-500 for the initial visit and $125-160 for later visits. Paying more than that somewhere else seems crazy.


good luck to you...

Fern,

Here's a link to a search for vascular docs - just enter your state.
(I checked - there are four in Minneapolis, 1 in St Paul)

If none of them have experience with TOS, at least they are a GOOD link to other Drs who do. Be persistent. I have this condition - it's serious - I'm going to have surgery, but I HAVE to find someone close who has some knowledge and can take over care afterwards. Who would you send your wife or daughter to?

I have found if I leave my name and number with the receptionist, tell her I have TOS and am would like the Dr's advice, even if he doesn't treat it, most will call back. The Dr I finally saw to take care of my infected stitch following pec minor surgery (no local surgeon wanted to touch an out-of-state Dr's work!) was a plastic (hand) surgeon - that's also a possibility you might consider.

Best wishes!
beth :hug:

beth
 

thx for your good ideas. can you supply the link pls.

OOPS!! :o

http://www.vascularweb.org/_CONTRIBU...an_Search.html

He he - I get just a wee bit distracted and forgetful at times! :rolleyes: ;)

I just wanted to add H.L. Saylor's name to the list of Minnesota vascular surgeons. He's at the Minnesota Vascular Clinic attached to Fairview Hospital in Edina and uses the first rib resection with transaxilliary approach.

http://mnvascularclinic.com/pages/sitemap.html

Also wanted to note that Paul G. Gannon has retired.

thx, Melissa. Although I will report here that you found that Dr Saylor only does 3-4 of these a year I think you said.

I am still in pursuit of a treating doctor. Replacing a TOS knowledgable neurologist like Dr Jordan or Newkirk is proving so very difficult. I phoned 2 recommended neurologists, each a different top clinic and asked if the rec. doc or another in their clinic could assist me. In each case I received a return phone call saying no neurologist on their staff knew much about TOS. One clinic said to go to an orthopedic doctor (no specific rec) and the other said to try a physical medicine doctor (also no specific rec). Next I tried meeting a recommended internist, thinking perhaps she might help me find a treating doctor. But to no avail; the internist simply said she is a garden variety doctor and to come back if I have a cold or something. She didn't know of anyone to send me to and didn't offer to do anything to help me find anyone. OK enough venting. soooooooo frustated.

Fern, I wish you luck. Like you ,most Neuros and Physiatrists I saw didn't have a clue. In seeing my Physiatrist for 6 months, he never once touched me after the first visit. He never offered any injections, only topamax, methadone, lyrica, etc etc etc. After reading Johanna's post about botox I asked my neuro about these and he finally did them. Then my physiatrist got aggrevated I didn't ask him do them. I asked "why didn't you ever offer them to me"? His reply was......"well they only work short term 3-6 months". In terms of severe pain 3-6 months sounded good to me. :rolleyes:I stopped going after that. I still see my Neurologist, he's been the biggest help to me. :hug:

another option is to look for an osteopathic doctor- they tend to learn about TOS during school.