[johannakat]

Thansk, Jo

So moving on then....

Saw Dr Ahn First...except that I didn't really see him, I saw his junior associate Dr Reil. Since my primary Neuro is Dr. Jordan and they all work together frequently, basically I was told on the first visit that they would want an SSEP to rule out Carpal Tunnel and Ulnar Tunnel, a left scalene block to confirm the dx on the left side (i wasn't too jazzed about this bc they wanted to do it with no anestesia...) but that basically, sure they'd be happy to remove my rib transaxiallarily (sp?), and they removed all but 4" of the middle and anterior scalene muscles in that operation. I was also told 25% of those patients have to come back a year later for complete removal of those scalenes with is done supraclavicularly.

I was not really in the mood for 25% chance of second surgery.

They also made recovery sound like a breeze...oh yeah
i'd be up and around and happy in a week,
no lifting restrictions,
could drive as soon as i wasn't on narcotics anymore (2weeks?),
insurance wouldn't pay for a second night in the hospital so i only got one but I wouldn't care, i'd be ready and happy to go home...
and finally, they could do the second side 4-6 weeks after the initial procedure but I'd feel "pretty beat up"

At the time is sounded so easy...sign me up, right? Ahn is a good surgeon, surely it will be fine.

Well, in talking with my neuro later he said maybe to expect more like 6 weeks to three months recovery (what surgeon who wants you to feel comfy is going to tell you that straight up?) and suggested that all surgeons have better memories for their easy patients and that they tend to refer the hard ones to someone else so they aren't sitting around the waiting room complaining about how miserable they are


I got the SSEP, not too painful, came back normal. Put off the left scalene block as long as possible hoping to talk them out of it. I was eventually successful in that when I met Dr Ahn directly, but I'll tell how and why later...

As a side note, Dr. Ahn's office runs very efficiently. Michael, the guy at the front desk, is super friendly and always knows who I am when I walk in the door. He has gotten anything I needed super fast and always with a smile. My appointments were always pretty much on time as well.

[johannakat]

I also saw Dr Filler early on in the process. As the lone scalenectomy provider in LA of course he was going to be on my list.

Surgery aside, I was definitely curious about the MR Neurography. For me, I think it has been the most successful test next to Dr. Jordan's ultrasound in finding the anatomical anomalies.

I went to see him twice in his office, and he ran miserably late both times. The second time I had called ahead and arrived late so it wasn't a big deal. The first time I was running late myself and got to his office all smelly because I hadn't had time to take a shower....I wasn't any better after waiting two hours for him, but I guess he got what he deserved!!!

SHeila was very nice, the Nurse practitioner, she took my history and then went to report to him. It felt a little disjointed, though....like I didn't know how much she had told him of what i told her. HE also talked to the ceiling the whole time i was there which was kind of annoying...however, i wokr at a company of very bright but socially maladjusted engineers, so i am sort of used to this stuff.

I was somewhat alarmed that after talking to me that first appt, he seemed willing to operate without even taking an MR neurography. That was my first warning sign. In any case, I had just had my second round of Botox injections at the time, so I wasn't quite ready to jump into the operating room yet. We agreed that in six to eight weeks I would have an MR neurography of both sides of the brachial plexus and see what it showed.

When he came time to schedule and the MRN. I had to ask the office to change the order for both sides of the brachial plexus, because as some other doctors have done in the past he was convinced that I only have problems on the right I'm not sure what it is that I say that give people the impression. But seeing as how I'm having the laft side operated on first I certainly don't think my symptoms are only on the right.

The neurography was pretty cool. It showed distortion of the course of the brachial plexus consistent with thoracic outlet syndrome on both side. It also showed some irritation of C8 on the left side, which is the nerve that comes out at the cervical and thoracic spine junction.

Interestingly, the approxiamte location of C8 is where I have the constant butcher knife pain that never goes away so for me. I think the MR neurography was dead on.

Also, interestingly, Dr. Riel was very happy to talk about the neurography when I brought the results to their office probably this is because it supported letting them operate on me :P

In the end plan met with Dr. filler to discuss the results of my neurography's, I was unimpressed with his ideas and a few things that you mentioned "remembering" that didn't make it into the report of my scans, and he was basing his surgical recommendations on these "memories." Seems to me that if it was that important enough to base a surgical recommendation on, it should have been in the report.

He did reccomend a scalenectomy and neuroplasty, and said that the neurography did not show that my rib was causing any compression. He would come in supraclavicularly and cut out a few inches of scalene muscle, clean up the nerves, wrap them in seprafilm, clise me up, then come in axiallarily adn lean up and scar tissue in the distal portion of the brachial plexus (front of shoulder area)

The other thing that bothered me about Dr. filler was that his scalenectomy only involves cutting out a couple inches of one scalene muscles seems like that's a lot of muscle to leave behind to reattach somewhere else. It bothered me more after I thought about how doctor Ahn does his surgery-he's leaving 4 inches of muscle and 25% of the time still going back in to remove it.

The other thing that finally killed all thoughts of having surgery with Dr. filler was that I told him I couldn't possibly make arrangements to have surgery with him unless he could tell me how much I was going to have to pay out of my own pocket. His office offered to call Blue Cross of California with procedure codes and charges. Now I happen to know the Blue Cross of California is especially difficult about this kind of thing when you call them and say here's the procedure coding here's the charge for whatever reason they can't tell you how much you're going to end up having to pay. However, I don't feel like his office made a particularly strong effort to get that information for me and I specifically told him I couldn't sign up for surgery without it.

So filler was probably my first elimination. However, I found the neurography results to be very useful.

[Jomar]

This thread & list was started in 2006 - so some links may be expired and some providers may be retired or closed their practice by the time you are reading here..so a web search to check for current info of names listed might be a good idea.



If you find helpful practitioners for TOS, please add their name & contact info/location/website to this thread.

[Toby]

Hi

There is a great Thorasic Surgeon in Calgary, Alberta Canada.

Dr Sean McFadden
Foothills Medical Centre
(403) 944-4279

[Jomar]

http://neurotalk.psychcentral.com/sh...ad.php?t=33340

[ocgirl]

Johanna did a great job on deciding how to pick her surgeon.
I would like to add a surgeon's name that many of us on the board have used and been very happy with.
Stephen Annest M.D. and the Vascular Institute of the Rockies was my pick. I pretty much went through the same process as Johanna, with a few different docs and in 2004.
I had a great experience with Dr Annest and his group and I traveled from Calif to Colo.
If you need financial assistance to get to Colo you can go to
www.joniandfriends.org and look up the Christian Fund for the Disabled.
For free flights for medical travel look up Angel Flight. There are several groups that do this. Motels in Denver will give you a discount is you tell them you just got out of the hospital.

__________________________________________________ ______
Vascular Institute of the Rockies
Dr. Synn
Dr. Annest
2253 Downing St.
Denver, CO 80205
(303) 830-8822 main office
1-800-992-4676 toll free
(303) 830-7019 billing office
FAX : (303) 830-7068
E-MAIL: info@vascularinstitute.com
Website: www.vascularinstitute.com

[billy027]

http://www.nervepain.com./


We Can Help The Upper Extremity Institute is a division of the Montgomery County Hand Center, founded in 1991 by Scott M. Fried.A recognized leader in the understanding and treatment of nerve and upper extremity disorders, Dr. Fried has assembled a growing team of fully qualified, highly trained and thoroughly conscientious healthcare professionals dedicated to one basic principle: compassionate, conservative care for your injury.
About Dr. Scott Fried
Dr. Fried is a board-certified orthopaedic surgeon, fellowship trained hand surgeon and a hand and upper extremity specialist, and a fellow with the American Osteopathic Academy of Orthopaedics. Affiliated with Mercy Suburban Hospital and the President of the Upper Extremity Institute, Dr. Fried has treated thousands of patients with complex nerve problems. He has also lectured and written extensively in the areas of pain and nerve disease and standard as well as alternative healing. His books, Light at the End of the Carpal Tunnel: A Guide to Understanding and Relief from the Pain of Nerve Problems, and The Carpal Tunnel Help Book, grew out of his years of experience, research and an in-depth understanding of medical and alternative treatments for nerve-related traumas. He is also President and Chief inventor of Doctor in the House, Inc., a company dedicated to the development of medical devices for home treatment of orthopedic injury.

Some of his society memberships include the AMA, AOA, Philadelphia Hand Society, Jefferson Hand Club, Jefferson Alumni Association of Thomas Jefferson University Medical College, The Jefferson Orthopaedic Society, The American Society for Clinical Hypnosis, The Greater Philadelphia Society for Clinical Hypnosis, The Greater Philadelphia Pain Society, The American Association for Hand Surgery (A.A.H.S.) and he is Past President of the Hand Surgery Section of the AOAO.

For more on Dr. Fried, click here.
1515 DeKalb Pike Suite 100 Blue Bell, PA 19422
Phone 610-277-1990 Fax 610-277-

[TOSchick]

I also traveled from CA to CO to have the pec minor/scalene resection (TOS) surgery. Actually, both sides. Both times, the surgery helped tremendously.

Great surgeon and doctor's office. Dr. Annest performs multiple TOS surgeries on average per week. He is a perfectionist and has excellent bedside manner.

Additionally, he is capable of making the incision for the TOS surgery under one's armpit instead of across the collar bone region. My last operation was under a year ago and my scar is near invisible.

[tericandoit]

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.


Teri

[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.