I Wanna Write (?) A Book
 

Iwasjust listening to my hypnotherapy tapes.

And jumped up and thought I need to put together a book
I'll hire the writer
On everyone's experiences from beginning to present just as Johanna documented.
It would give patients in our shoes a wealth of information, the docs available in their area and the tools to make an informed decision.
We can use first names and area only for privacy.
Like the forum isn't an open book, huh?

This could be the start of the non-profit organization for TOS
With all the docs informative opinions, radiologists, PT,s Do's, Chiros, Surgeons, Neuro's, physch's, etc...

Ending Comments
 

:winner_first_h4h: I felt Dr Ahn had an edge, technically, over everyone else. He was able to boil our discussion down to the important points. He listened to my concerns, addressed them, and gave me the tools to make the most informed decision i could make. He was able to explain with amazing clarity some of the things I had wondered talking to everyone else.

:icon_exclaim: I don't think any of the surgeons I visited would be bad choices. They are all highly respected and very familiar with TOS. I am glad I saw each one of them because they all made their own positive contribution to my research.

:icon_idea: Dr Jordan's ultrasounds and special scalene block of the right side confirmed my dx early on as well as the presence of a fibrous band and an extra artery. The botox injections that I had two times after were futher confirmation that TOS was indeed the culprit.

Dr Ahn's use of the above mentioned two tools for diagnosis of TOS is an excellent and efficient choice, because they are sound. I think it seemed abrupt to me the first time I visitied because I didn't feel like Dr Ahn/Reil really thought about me, they just were hungry for my business. In fact, I don't think that is the case, i think they just really trust Dr Jordan (as well they should because he is awesome :D ) He would probably be my first choice even if I didn't live in LA.

Dr Filler's neurography confirmed the aggravation of C8 on the left side, which was very helpful to me to describe and identify the pain in the back of my left shoulder. I think he has really developed something great:Tip-Hat: , and I hope the reasearch can be put together to make it a more generally accepted diagnostic tool. Even though I had the impression that other doctors didn't really take the MRN seriously, I found most of these surgeons were happy to talk to me about it and what it showed. I think it supported my symptoms so well that it made good sense. However, I am not keen on his partial scalenectomy with neuroplasty procedure, it was my least favorite of the 5.:Noooo:

:Doh: Dr Weaver- well, I guess he was my token "maybe you ought to do more PT" and frankly that sugggestion made me more sure i was ready for surgery than anything else...! Also, his lack of interest in nerve compression made me more aware how important mine was. his supraclavicular scalenectomy and rib resction would have been pick number 4, based on Dr Jordan's high marks for Dr weaver's work.

Dr Brantigan- That's where I got the paper that suggested the scalenectomy along with rib resection for upper plexus symptoms. This was a key finding for me. Also enjoyed learning about his apporach based on anatomical anomalies. He was a bit gruff and not at all modest :icon_rolleyes: . I was dissapointed to find that he did not know about Dr Jordan's ultrasound procedure, seemed like a gap in his TOS knowledge. I would have picked him as option 3.

:You-Rock: Dr Sanders- Simple version of left scalene block helped me feel quite distinctly how bad my "good" arm felt. Really enjoyed his office personality, extremely genuine and personable. Also offered up the MAC study which clearly showed abnormalities on both sides. He is clearly an "hands on" type doctor. Felt a little more old fashioned in that way. I think he has something special and he was an easy second choice.

:Ponder: one thing i am still confused about:
I am not sure what to make of the descrepancy in statistics for scalenectomy alone. UCLA studies and Dr Ahn claim a 45-55% success rate for scalenectomy alone, and Dr Sanders claims a 70% success rate. I think for that to be real, there must be something special that Sanders does and others don't. I know he does a more complete scalenectomy than Filler, but I don't think it is more complete than what Dr Ahn does. So, I am just not sure what to make of it.

I really hope I have made the right decision. I guess for all of us, only time will tell....all of them suggested that it takes about 18 months for scar tissue to stabilize, so I guess it'll be that long before i really know if it worked.

If it does or doesn't work, I am not sure I'll ever know how much of a role the surgeon really played in it. How can we ever know? Statistics only matter to a bunch of people...for each individual it either works or doesn't.

ah, it is late and I am rambling. :Talkative:

PLEASE feel free to point out errors, omissions, ask questions, or whatever.

If you actually bothered to read all of my crazy :Crazy 2: ramblings, you are probably also looking for a surgeon, and I'd be happy to share any forgotten details any time.




:Thank you:And thanks again to everyone who shared their input with me over the past few months.


Johanna

Staying 2 nights
 

When I was recently hospitalized for 5 days I was reminded of issues of hospital bed shortages that I hadn't thought about in 7 years.

When the census of the hospital gets very high and there are scheduled surgeries in the morning the management (nursing) begins to look around for people who could be discharged that night to avoid having no empty beds for emergency admissions and beds for post operative patients.

In case on your second night in the hospital you are approached and told you are going to be discharged request/demand to see the hospital supervisor. This is the nurse who is supervising the hospital and they might be able to advocate for you if this happens. This person could also help you for other problems that were not resolved through the chain of your personal nurse, the charge nurse, manager of the floor you are on (surgical) then the house supervisor.

On the topic of scalene blocks, when Dr Jordan did my scalene block 12/00 I was referred to him by Dr Ahn (Dr Ahn was not doing them at that time)
I has only been recently that I have heard of Dr Ahn doing scalene blocks.

There are two surgeons in on your surgery. I'm assuming that the second surgeon would be his associate Dr Reil.

Is Dr Reil doing surgeries on his own or is he an understudy of Dr Ahn? Since Dr Ahn comes from UCLA (a teaching hospital) is Dr Reil going to be assisting Dr Ahn or is he going to be gaining rib resection and scalenectomy experience by doing most of your surgery with Dr Ahn teaching & advising?

Sorry to be a pain for you. As a nurse I am used to critical thinking and I want to make sure that Dr Ahn's hands are doing the surgery and not Dr Reil's hands with Dr Ahn directing and advising.

Hat's Off to You, Johanna..
 

:Tip-Hat: Johanna,
What a great thread and so informative...
Something like this would have been so helpful prior to my Surgeries...
I hope that people that are contemplating surgery will take a long hard look at your thread... As long term results will most likely stay with them for life...
Many Hugs and Best Wishes for a Successful outcome tomorrow...
:hug: :hug:
Dawn

List of medical abbreviations-From Wikipedia
 

http://en.wikipedia.org/wiki/List_of..._abbreviations

the list/chart on the link is huge and detailed

Hi

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

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

PT info threads
 

Stephen Annest M.D.
 

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

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-

Houston Neurosurgeon
 

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.