[jenny37]

Originally Posted by colleen

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.

1. Find out if they TREAT TOS before you start down the testing/diagnostic path.
2. 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.
3. 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).
4. 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).

[Wharris85]

Couldn't help but notice Alabama was left off the initial list. Anyone know of/have experience with any doctors in AL?

[Jomar]

This is interesting - might be handy for those with legal cases.

Directory of Forensic Expert Witness in Thoracic Outlet Syndrome (TOS)

http://www.hgexperts.com/listing/For...rome-(TOS).asp


Medical Expert Witnesses
Find medical expert witnesses for plaintiff or defense attorneys-
http://www.hgexperts.com/experts.asp?action=search


PS -wharris - I was doing some searches for Alabama drs when I found above info.
If some of the names/info listed above are in Alabama they may know of good drs for you.
We may not have had anyone from that area to post about drs yet.

[farmgal]

I can give better feedback tomorrow after my 2nd appt w/Dr Richard Meyer (UAB in Bham). Saw him back in 2005 when he diagnosed me w/TOS. In a nutshell, his advice was to 'suck it up' as long as possible before considering surgery. I'm going back to see him because my symptoms have gotten worse even after taking a month of unpaid leave from work. I'm also having more vascular symptoms lately so I think some additional testing is in order. I really hope he has something to offer besides surgery (still not sure I'm ready for that yet . . . once you do it you can't go back). At this point, I haven't yet found any docs in AL that I'd feel comfortable slicing & dicing on me.

[alabamabrands7]

Originally Posted by Wharris85

Couldn't help but notice Alabama was left off the initial list. Anyone know of/have experience with any doctors in AL?

Any luck finding someone in Alabama? Have you gotten relief yet?

[1abqdad]

Most patients fail to get proper help BEFORE choosing surgery! I have a lot of medical background and was astonished at the lack of effort on the part of poor quality doctors to validate BOTH the diagnosis and the severity of TOS! BOTH of which were huge issues with the first FOUR neurologists that examined me! ALL of them missed the TOS totally! (It is NOT surprising that there were NO inputs here for specialists in New Mexico, as they ALL messed up my diagnosis horribly!) I finally tapped into my network of knowledge as a biomedical researcher, and found Dr. Ernestina Saxton. She was not only incredible as a TOS expert, she is the greatest at simply being a doctor and compassionate human being! (Rare in the world of specialists these days!) Dr. Saxton has developed a network of specialists to verify TOS and its severity, which is a huge problem with other doctors! Dr. Collins verified the TOS and the severity was established with a scalene block. (NOT fun!)

I have to DRIVE 800 miles for an appointment with Dr. Saxton, as I can no longer fly (due to the altitude/lack of oxygen), and it is WELL worth the drive to see the BEST! It's interesting, but NOT surprising that most of her patients have traveled from all over the country and the world to see her! I'd travel ANY distance to see her!

[JennyHurts]

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

[kyoun1e]

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

[tossucks]

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

[kyoun1e]

Originally Posted by tossucks

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