NeuroTalk Support Groups - DOCTORS & PTs List and saved PT info threads

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- Thoracic Outlet Syndrome (https://www.neurotalk.org/thoracic-outlet-syndrome/)

- - DOCTORS & PTs List and saved PT info threads (https://www.neurotalk.org/thoracic-outlet-syndrome/135-doctors-pts-list-saved-pt-info-threads.html)

California - Dr. Paul Willis

Paul W. Willis, D.O., Inc
Dr.Paul@earthlink.net
1305 West Arrow Hwy, Suite 106
San Dimas, CA 91773
(909) 971-0100

If you get his answering service, leave a message and his receptionist will call you back! (His private practice is new, his patient load is small, and he's not in the office unless he has a patient who needs him. Good news is, when you need him, he's usually available, and he'll spend A LOT of time with you, fixing you up.)

He is a private membership physician. (Yearly fee, no insurance.) As an osteopath, he's well-versed in dealing with TOS. He can give you some ongoing treatment and RELIEF.

Also the first aid doc at Angels Stadium, and he's worked with lots of celebrities, etc. He's a real gem. :-)

~ Jenny

Besides the two Drs listed at the beginning of the thread, wondering if anyone has run into Neurologists/Vascular Drs in the Boston area or southeastern MA area?

I'm from Scituate...south shore of MA. I have a bad feeling I'm going to waste a lot of time with the local neuros my PCP is recommending.

Thanks.

KY

Here is the name of a very conservative TOS specialist in Boston
Dr. Dean M. Donahue
Thoracic Surgeon
massgeneral.org/doctors/doctor.aspx?id=16342

Quote:

Originally Posted by tossucks (Post 720720)

Here is the name of a very conservative TOS specialist in Boston
Dr. Dean M. Donahue
Thoracic Surgeon
massgeneral.org/doctors/doctor.aspx?id=16342

Thanks much!

KY

http://eeshop.unl.edu/text/findadoc.txt

has a list of doctors and other stuff, for anyone whos desperate

Having surgery by Dr. Kim on May 24th

Just wanted to post that while I do not have TOS I do have the exact same trouble with my C4 to C7 discs. What that does mean is that it is causing the neck/shoulder pain I am having and the tingling numbness down my arm. I have tried PT, but when it gets to the point of that weird tingling, that usually suggests some nerve damage of some sort. I was referred to Dr. Kim who is a neurosurgeon by my neurologist, Dr. Nammour. I believe that when you finally make it to a neurosurgeon, it is all about surgery usually. Unless you elect to not go that route and risk severe nerve damage. I came equipped with my MRI's on disk and Dr. Kim's office had my neurologist's notes when I arrived. I think I only waited about a half hour to see Dr. Kim. While he was somewhat hurried in his approach, he and his associates did spend a moderate amount of time with me and my husband explaining the procedure, the expected outcome and the risks involved. Dr. Kim elected to do minimally invasive surgery where he would clean up the bone spurs and protrusions rather than perform disc replacement. I am very grateful that this is an option because disc replacement is definitely super invasive surgery and takes a longer recovery time. Dr. Kim informed me that what we are trying to accomplish from this surgery is to prevent any damage from getting worse. It will be icing on the cake to clear up the symptoms or pain or damage. But that is not to say it is not usually successful in the 90 percentiles. He hopes to buy me at least another 5 to 10 years before disc replacement is needed. I guess I will see how it goes and post after I go through the procedure next week!

Lisa

"My MRI showed the c5-6 disk to have moderate central and right side disk protrusion and bone spurring into the right neural foramen causing moderate right foraminal compromise. Dr. Sanders said that this could be causing a good portion of the symptoms of neck/shoulder pain as well as some of the neurological symptoms of tingling in my arm. Dr Sanders also said I definately have not had enough PT and from what it sounded like, not the right kind of PT. He said that therabands shouldn't be used, that they can make the symptoms worse (my pt was using therabands)."

Quote:

Originally Posted by colleen (Post 325490)

Well, I thought I'd follow up since I posted Dr. Kim as another Houston doctor.

Things I liked:

He clearly had experience with TOS, although I'm not sure I'd consider him a TOS expert.
He definately worked with Dr. Kline doing the post-surgical TOS follow-up studies.
Provided surgical outcome expectations - 60% feel some improvement, 5% feel they shouldn't have had the surgery.
Said if I had surgery it would be a joint surgery between him and a vascular surgeon & referred me to see a surgeon he has worked with before.

Things I didn't like:

My appt was scheduled for 9am. I didn't see him till 11:30.
Rushed appointment - didn't get to ask all the questions I had.
Said I had neurological and vascular TOS. Didn't suggest any testing to determine which was the dominant issue.
Gave me the "if you can live with the pain...." speech.
Never indicated if there might be risks to NOT having the surgery (annurisms? nerve damage?). I mean if my artery is being obstructed, isn't that bad? Should I suck up the reduced circulation to my arm and just deal with it? Is that good for you? Do I really have arterial TOS??? I don't even know what I have.
Never looked at my c-spine MRI's. Said everyone has bad disks, focus on the TOS and if we need to we'll worry about the disk later.
I asked if there was any other pt or another pt that I could go to that might help and told him I didn't think my pt knew how to treat TOS. Dr said it looked like I already tried that and it didn't work (I had 6 sessions with a PT that was doing things that I'm reading you should NOT do for TOS).
The vascular surgeon he referred me to seemed a little wishy-washy. She wanted to redo my doppler study (sorry, but if my pulse cuts off for the first one, it's going to cut off in the 2nd.... just because it wasn't done by Baylor people doesn't mean it wasn't done ok.... I mean how likely are you to have a false-positive doppler scan where it shows your pulse was cutting off but it really wasn't???). Then after that she became more wishy-washy saying "Well, if Dr. Kim wants to do the surgery without any further testing then .... well, I'll talk to Dr. Kim and we'll call you back to schedule any further testing". ----- it's been 2 weeks... no word.

That last 2 bullets are the key ones. I had a phone conversation with Dr. Sanders yesterday. He said that the bad disk in my neck should definately be further investiagated. My MRI showed the c5-6 disk to have moderate central and right side disk protrusion and bone spurring into the right neural foramen causing moderate right foraminal compromise. Dr. Sanders said that this could be causing a good portion of the symptoms of neck/shoulder pain as well as some of the neurological symptoms of tingling in my arm. Dr Sanders also said I definately have not had enough PT and from what it sounded like, not the right kind of PT. He said that therabands shouldn't be used, that they can make the symptoms worse (my pt was using therabands).

Dr. Sanders did give me the name of a Neurologist in the North Houston Area. His name is Lee Pollack. I've seen that name somewhere, but I'm not sure where. Dr. Sanders said that he receives surgical referals from Dr. Pollack and feels that Dr. Pollack would be able to connect me with the proper therapy/treatment. Then if that doesn't help after 3-4 months, then call Dr. Sanders back again......which at that point I guess I'd be more of a surgical candidate.

I was VERY happy with the phone consultation Dr. Sanders provided. I was so upset prior to this that I was ready to hop a plane somewhere just to have someone be able to definatively tell me what is wrong with me and to what degree.

I'll follow up with a review of Dr. Pollack after I see him (unfortunately not for another month). All the doctor reviews people provided here have helped so much. I hope this can help someone else who feels like I do.... completely frustrated, confused, angry, depressed, and everwhere in between.

http://www.uggen.net/mike/writing/conditions/TOS.htm

http://www.uggen.net/mike//treatment.htm
Michael Uggen, Licensed Massage Practitioner. Washington State Massage License Number MA 16912
Nationally Certified – NCBTMB
Member – AMTA

i have NOT been here but this guys website and writings are very appealing, if you're the WA (?) area..i would definitely check him out.

Not for PT, but more massage/bodywork

Quote:

Originally Posted by colleen (Post 352007)

Being in one of the largest medical centers in the world, you think it wouldn't be that hard to find someone to TREAT someone...

Biggest lessons learned during my Doctor shuffle experience from hell...Hopefully this helps someone else.

Find out if they TREAT TOS before you start down the testing/diagnostic path.
If they only do surgery, but are not willing to treat conservatively, go to someone else first. Why would you want to see someone to cut who isn't willing to try other possibilities first. This obviously doesn't apply if you have tried everything else and are ready for surgery.
A doctor who could actually treat you conservatively may not want to pick up after you have seen a dozen other doctors. It's a lot of work for them that they won't get paid for (trying to read through/interpret all the other testing).
And on that note... if your like me and you've been to other doctors who WOULD NOT treat you, only give the potential new doctor the minimum of information. Don't go in with a 1" stack of your medical record. Yes, give them the test results that led to the diagnosis and info on symptoms, etc. Just don't tell him every doctor you saw who did nothing for you or were only willing to do surgery but not treat you. Don't let them think you're just hopping around doctors for no reason.

Houston Doctors - My experiences, My opinions
Lee Pollack - Neurologist - 281-367-1388

Understood TOS
almost wouldn't treat me since I've been shuffled from doctor to doctor. Felt that one of the MANY doctors I've seen should have taken responsibility for my treatment (I agree, but it's not my fault they either wouldn't or only wanted to cut.
He agreed to treat me after I started crying and explaining how they either didn't know anything about TOS (family physician), referred me off to someone else and didn't want to treat me anymore (orthopedic surgeon), or ONLY wanted to do surgery (ALL others I've seen)
even considering the issue of almost not treating me, I like him better than any other doctor I've seen. He clearly understands TOS, was able to refer me to a PT that understands TOS and isn't eager to cut. He answered questions I've had since day one that noone would or could answer.

Dr. Azizzadeh - vascular surgeon - Memorial Herman

Understood TOS
He's a surgeon... Ready to cut - not treat
Didn't tell me anything about surgery outcome results. Told me "well if we need to do the surgery, we do the surgery... (like not that big of a deal). The outcome results I've read don't paint that rosy of a picture that it's not that big of a deal.

Dr. Noon - vascular surgeon - Baylor

Mail him your tests and he'll review
does not treat - just does surgery
Since I want some form of conservative treatment before surgery, I didn't persue seeing him any further

KSF Orthopedic - Dr. Kant

Willing to look at the whole person instead of just a piece (only knee or only ankle)
Willing to run whatever tests (if you ask). Did not run my MRI until I told him vascular surgeon wanted it done. Found I have a bad C5-6 disk that is compounding my problems. Wouldn't have known if I hadn't told him how to treat me.
After diagnosing me, he referred me off. One visit told me to go to a vascular surgeon. Next visit told me that I should start going to my primary doctor for my prescription refills from now on and he'd even send a letter to my family dr about my medication. --- In otherwords, go away, I don't want to treat you anymore!

KSF Orthopedic - Dr Nash - Neurologist

Performed EMG/NCV. Didn't see find anything.
2nd emg/ncv done by another neurologist did find minor ulnar nerve damage.
Just does the test - doesn't treat.

KSF Orthopedic - Dr. Jafarnia

Doesn't treat TOS. Couldn't diagnose me.
Referred me to Dr. Azzizadah (who I didn't like) if I needed to investigate whether I had TOS.
Said Dr. Azzizadeh is the only dr in Houston that REALLY treats TOS (which he obviously isn't)

KSF Orthopedic PT department

Improve posture via streghtening exercises (weights/therabands)
Dr. Sanders said later that this isn't the right type of PT... that it could make symptoms worse
PT seemed to be googling his way through my treatment. One day he did first rib mobilization in one area and the next he was pressing in a totally different area. One had to have been wrong.
Suspected I had a bad disk but never said anything like "hey you should have Dr, Kant do an MRI" or "hey I suspect...". After my MRI, he said "yea I wondered about that"

Dr. Killian - Neurologist - Baylor College of Medicine

Very thorough EMG/NCV
No clue about TOS - diagnosed me with unspecified abnormality at ulnar nerve and said he didn't think my TOS is neurological.
Doesn't treat - only performs the tests

Dr. Kline - LSU

Retired
Referred me to Dr. Kim - Baylor Houston

Dr. Kim - Director of Neurosurgery - Baylor Houston

Understood TOS. Gave me outcome statistics on TOS surgery (matched what I have read other places)
Was ready to cut. When I asked about conservative treatment - other PT??, ANYTHING - he said it looked like I've already tried that and it didn't work.
Asked about bad c5-6 disk that showed up in my MRI - he said "everyone has bad disks - lets focus on the TOS first then we'll go back and look at the neck/partially torn rotator cuff after if needed"
Next visit I asked him if he could actually LOOK at my MRI (since noone had except the radiologist). No, he didn't bother looking at my MRI during my first visit.
After looking at MRI - He said I needed a discectomy... that removing the bad disk should be the priority and not the TOS.
Asked about conservative treatment for bad cervical disc. He said I shouldn't wait another 6 months to have the surgery. Didn't want me to try epidural steroid injection because "that isn't without it's own risks"....... Well it may have risks but it's less invasive than surgery!
After my 2nd exam, I was asking the nurse about anything else I could try (she was ready to schedule my surgery and was asking me when I wanted to have it done). Dr. Kim came back in and said I could TRY traction for 2-4 weeks and see if that helped.
Overall impression - good if you are ready for surgery. Happy to cut. Not eager to consider conservative treatment.

Dr. Huynh - Vascular Surgeon - Baylor

Not impressed. Appeared "wishy-washy". Said "well if Dr. Kim is ready to do surgery without any further testing... ok"

SO... my choice of Houston doctors.... Dr. Lee Pollack.
But try him first, not after you've been shuffled all over town.

Hopefully this can help some others out there before you get shuffled around too, cause that sucks almost as much as having TOS in the first place.

DO NOT GO TO DR. Azizzadeh. He did my surgery and screwed me up worse back in January 2007. At the time he said he'd done the surgery 30ish times and had success with everyone. He was cocky and over confident and did not listen to me. I was too young and naive to source a 2nd surgeon option. There were complications in the hospital, but they would not tell me what and kept me there for 7-days. They took pain medication away from me after the first day and I suffered despite my complaints of their lack of pain management. After I left the hospital they gave me 20 Vicodin (lowest dose) or something ludicrous like that. We all know that Vicodin does nothing for our pain. I called the dr office to complain almost everyday and they did nothing for me. I ended up having to get marijuana for pain management because Azizzadeh did not manage my pain effectively. At my follow up appointment the doctor did not listen to me at all. He grabbed my arm pulled it back and told me how awesome he was for fixing it. It was not fixed and he would not listen to my complaints. I was so ****** I walked out while he was talking and blew off all future appointments. I found another doctor to treat me for pain management and I've been on morphine/diluadid ever since. NOw I'm dealing with the side affects and physical dependence of those meds after 4-years of being on them.

Now I'm having Dr. Sanders in Denver do my surgery in 2-weeks nearly 4 years after Dr. Azizzadeh screwed me up and made my pain worse (by 50%). I'd say having surgery with Dr. Azizzadeh was the worst decision I've ever made in my life.

Within 5 minutes of speaking with Dr. Sanders I realized how clueless Dr. Azizzadeh is on TOS and the TOS surgery.

Please do NOT go to DR. Azizzadeh. It's worth the trip to Denver for Dr. Sanders... the dude wrote the BOOK on TOS and has done the surgery over 2,000 times. I'd much rather have that experience than someone who barley has any (and has a cocky know-it-all attitude at that).

Best doctor/therapist to start with?

I am not ready for surgery, but would like other assistance. What's the best place to turn next?

Before being diagnosed I saw 2 chiros who did not help - in fact one made things worse.
I have seen a vascular surgeon who did tests but did not offer help.
Primary care who was not that knowledgable about my symptoms and referred me to spine specialist.
Saw spine specialist, who prescribed gabapentin and PT. After 3 mo on PT, said PT probably wouldn't help and there was nothing more he could suggest beyond meds.
PT is maybe helping? Not sure and will probably stop soon. I still have symptoms.

Now, I don't know what to do. Would you recommend I see a different spine specialist? Another Vascular surgeon? Massage? Chrio specializing in Active Release? Naturapath?

Thank you.

Smileymichelle,
I placed a copy of your post on the main area of the TOS forum, so more members will see it and reply
- here is the link to it-
http://neurotalk.psychcentral.com/thread156590.html.