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Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.

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Unread 07-17-2008, 11:12 AM   #31
colleen
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Originally Posted by colleen View Post
I called Dr. Kline's (LSU) office today in my search for someone who has a clue. His office told me that he has retired, but they are referring TOS patients to Dr. Daniel Kim (Houston Baylor). Dr. Kim was trained by Dr. Kline.
http://www.bcm.edu/neurosurgery/?PMID=7782

This was a great relief to find someone who had been trained in TOS. I meet with him next week. Hopefully this information will be helpful to others.
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.
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Unread 07-21-2008, 12:18 AM   #32
tericandoit
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Default Dr Harold Graeme French is GUILTY of negligence

If anyone is considering going to this Dr. French... they should call the Washington state Med. Quality control board and check his very controversial reputation. Not good from my experience with him...A simple Artho has disabled me and put me in cronic pain for life as well as 6 others I know personally.


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Unread 08-21-2008, 03:06 PM   #33
colleen
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Default Review of my experience with Houston doctors

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.
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Unread 12-27-2008, 04:31 PM   #34
lisa g
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Default wonderful surgeon

Dr Vern Campbell
St. Michael's hospital
55 Queen St.
Suitew 505
Toronto, On
M5C1R6
MUST BE REFERRED BY PHYSICIAN
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Unread 03-09-2009, 01:14 AM   #35
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http://www.ratemds.com/

[RateMDs.com allows patients to rate and read about their doctors and dentists.

We average over 800 new ratings per DAY, so please keep checking back.]
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Unread 05-12-2009, 12:46 PM   #36
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Couldn't help but notice Alabama was left off the initial list. Anyone know of/have experience with any doctors in AL?
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Unread 05-12-2009, 05:32 PM   #37
Jo*mar
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Default Directory of Forensic Expert Witness in Thoracic Outlet Syndrome (TOS)

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.
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Unread 05-12-2009, 08:32 PM   #38
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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.
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Unread 11-09-2009, 03:26 AM   #39
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Default Help with TOS!

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!
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Unread 03-01-2010, 12:17 PM   #40
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Default Tos

Thoracic Outlet Syndrome Help of New Jersey
2105 West County Line Rd., Suite 7
Jackson, N.J. 08527
Tel:732-370-5800

They offer non-surgical, drugless physical rehab for Thoracic Outlet Syndrome. They helped me avoid surgery for my neurogenic TOS. The only office I went to that could give me an accurate diagnosis and actually knew how to successfully treat TOS.
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