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


advertisement
Reply
 
Thread Tools Display Modes
Old 12-07-2015, 08:39 AM #91
fernie11 fernie11 is offline
New Member
 
Join Date: May 2015
Location: Berlin, Germany
Posts: 4
8 yr Member
fernie11 fernie11 is offline
New Member
 
Join Date: May 2015
Location: Berlin, Germany
Posts: 4
8 yr Member
Default NTOS Support/Specialist in Berlin, Germany

Any chance someone knows of a TOS doctor for Neurological symptoms in Berlin?
fernie11 is offline   Reply With QuoteReply With Quote

advertisement
Old 06-24-2016, 08:11 PM #92
Jomar's Avatar
Jomar Jomar is offline
Co-Administrator
Community Support Team
 
Join Date: Aug 2006
Posts: 27,678
15 yr Member
Jomar Jomar is offline
Co-Administrator
Community Support Team
Jomar's Avatar
 
Join Date: Aug 2006
Posts: 27,678
15 yr Member
Default June 2016

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.
__________________
Search NT -
.
Jomar is offline   Reply With QuoteReply With Quote
Old 09-18-2016, 12:05 AM #93
caliJane50 caliJane50 is offline
Newly Joined
 
Join Date: Jul 2015
Posts: 2
8 yr Member
caliJane50 caliJane50 is offline
Newly Joined
 
Join Date: Jul 2015
Posts: 2
8 yr Member
Default Aqua physical therapist in Long Beach, Ca

I wanted to let everyone know I have found a great physical therapist in Long Beach . I have formed a lot of scar tissue since my TOS surgery in 2013. This is the only therapist I have found that does not hurt me,she actually helps. She does myo facial release and cranio sacral pressure and as soon as she finishes, I get into a warm water therapy pool ( the warmest one around) and do more stretches.
Her name is Connie Bowin.
714-369-4072

Good luck.
caliJane50 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
jkl626 (09-18-2016), Jomar (09-18-2016)
Old 11-26-2016, 01:57 PM #94
jobby99 jobby99 is offline
Junior Member
 
Join Date: Apr 2012
Posts: 13
10 yr Member
jobby99 jobby99 is offline
Junior Member
 
Join Date: Apr 2012
Posts: 13
10 yr Member
Default Dr. Bernardo Martinez - new location

Dr Bernardo Martinez is now at 5122 Heatherdowns Blvd, Toledo, OH. He is still doing TOS surgery with the DaVinci Robot. He has 45 yrs of experience! He is probably not current on the newest treatment or experimental methods, but his robot work is very precise and not as risky as a human hand. He will not provide much support after surgery, as he does not provide complete care. He is a surgeon only and very busy! Unfortunately, he will not do phone call follow-up appointments, so you waste time driving to Toledo. He does surgery at UTMC, which has improved patient care in the past two years. In the past, the hospital was a questionable choice.

-Frank
jobby99 is offline   Reply With QuoteReply With Quote
Old 07-22-2017, 06:07 PM #95
DiMarie's Avatar
DiMarie DiMarie is offline
Magnate
 
Join Date: Aug 2006
Posts: 2,871
15 yr Member
DiMarie DiMarie is offline
Magnate
DiMarie's Avatar
 
Join Date: Aug 2006
Posts: 2,871
15 yr Member
Help

Quote:
Originally Posted by EasternShoreLady View Post
> Dr. Julie Freischlag
> UCLA Gonda Vascular Center

Dr. Freischlag is no longer at UCLA. She is now Chief of Vascular Surgery at Johns Hopkins in Baltimore MD

601 N. Caroline St.
8th Floor Adult Medicine Dept.
Baltimore, MD 21287
PH: 443-287-3497
FAX: 443-287-3500

Page Not Found
She is California now. Maybe US Davis, or Sacramento area.
__________________

.
Pocono area, PA

.

.

.
DiMarie is offline   Reply With QuoteReply With Quote
Old 09-12-2017, 09:01 PM #96
Jomar's Avatar
Jomar Jomar is offline
Co-Administrator
Community Support Team
 
Join Date: Aug 2006
Posts: 27,678
15 yr Member
Jomar Jomar is offline
Co-Administrator
Community Support Team
Jomar's Avatar
 
Join Date: Aug 2006
Posts: 27,678
15 yr Member
Default

update-
[UC Davis Health Vice Chancellor and Dean Julie Freischlag, M.D., accepts new position as president and CEO of Wake Forest Baptist Medical Center
Interim UC Davis Chancellor Ralph Hexter to name interim replacement in coming days
(SACRAMENTO, Calif.) —February 14, 2017

Vice Chancellor of Human Health Sciences and School of Medicine Dean Julie Freischlag will depart UC Davis Health at the end of April to take a new job as president and chief executive officer at Wake Forest Baptist Medical Center in Winston-Salem, N.C.]
UC Davis Health Vice Chancellor and Dean Julie Freischlag, M.D., accepts new position as president and CEO of Wake Forest Baptist Medical Center

Her newest info-
Julie A. Freischlag, MD - Wake Forest Baptist Medical Center
__________________
Search NT -
.
Jomar is offline   Reply With QuoteReply With Quote
Old 01-03-2018, 11:00 PM #97
Jomar's Avatar
Jomar Jomar is offline
Co-Administrator
Community Support Team
 
Join Date: Aug 2006
Posts: 27,678
15 yr Member
Jomar Jomar is offline
Co-Administrator
Community Support Team
Jomar's Avatar
 
Join Date: Aug 2006
Posts: 27,678
15 yr Member
Default

Came across this info & Dr...might be worth looking at if needed.
Thoracic Outlet Syndrome - Dr. Tim Tollestrup
__________________
Search NT -
.
Jomar is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Akash (03-21-2018)
Old 03-25-2019, 04:17 PM #98
kjjmt51 kjjmt51 is offline
New Member
 
Join Date: Mar 2019
Posts: 3
5 yr Member
kjjmt51 kjjmt51 is offline
New Member
 
Join Date: Mar 2019
Posts: 3
5 yr Member
Default Still happy with surgery and choice of dr?

Quote:
Originally Posted by johannakat View Post
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.

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.

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 ) 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 , 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.

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 . 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.

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.

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.

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

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




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


Johanna
Hi Johanna. I'm newly diagnosed and have had two appts with Dr Ahn who recommends PT and scalenectomy (not FRRS yet) if PT doesn't work. I've tried to search patients with surgical experiences with him in this group to no avail. I know it's been a long time since you had surgery but wonder how you felt about your outcome, etc.

Thanks
Kate
kjjmt51 is offline   Reply With QuoteReply With Quote
Old 07-18-2019, 02:07 PM #99
SAHOL78 SAHOL78 is offline
Junior Member
 
Join Date: May 2019
Posts: 11
3 yr Member
SAHOL78 SAHOL78 is offline
Junior Member
 
Join Date: May 2019
Posts: 11
3 yr Member
Default

I recommend Kjetil Larsen in Norway. He has online appointments as well as regular in office appointments. Has many videos in YouTube as well. Look up **

Last edited by Chemar; 07-18-2019 at 02:11 PM. Reason: NeuroTalk Guidelines
SAHOL78 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
chroma (10-16-2019)
Old 07-25-2019, 01:51 PM #100
Gloria_D Gloria_D is offline
Junior Member
 
Join Date: Jul 2019
Location: New York
Posts: 9
3 yr Member
Gloria_D Gloria_D is offline
Junior Member
 
Join Date: Jul 2019
Location: New York
Posts: 9
3 yr Member
Default

I read a lot of reviews and forum posts but they are fairly old. Anybody had recent appointments/surgery for neurogenic TOS with Dr. Donahue at Massachusetts General hospital and/or Dr Lum at John Hopkins hospital. I am trying to make a decision who to go to.
What additional testing do they perform except scalene nerve block if any? Are they reachable after your first appointment if you have any question/concern? Has anybody experienced unsuccessful surgery with them?
Would be good to hear from people that had surgery years ago if a rib resection created other anatomical imbalances and other symptoms.
Gloria_D is offline   Reply With QuoteReply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Doctors list from old forum Wittesea Thoracic Outlet Syndrome 2 01-09-2013 06:44 PM
Doctors list? richard d Reflex Sympathetic Dystrophy (RSD and CRPS) 4 11-25-2008 09:29 PM
I Just Saved $75 Per Month!!! Kitty The Stumble Inn 22 05-29-2008 07:23 PM
googled list of info links Jomar Meralgia Paresthetica 1 08-09-2007 02:10 PM
forum title list from '04 for rebuild info dorry Community & Forum Feedback 15 09-20-2006 10:03 AM


All times are GMT -5. The time now is 02:46 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.