Acromegaly Support Group
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.
Hello everyone, as you probably read from my previous post, I am new to the group. One of the things I'd like to discuss is surgeons. FYI, I am located in Arizona, USA, but I am looking at traveling to find the best surgeon.
I have done alot of research and found several surgeons that I understand are very good. I would like feedback as to whether anyone has good or bad experiences with them. The list below.
All of these do the transsphenoidal approach surgery, however some of them do an endoscopic (transsphenoidal) approach which is less known but seems to be much better from my review.
William White MD, Barrow Neurosurgical, Phoenix, AZ - microscopic surgical approach
http://www.bnaneuro.net/Pages/Docs/DrWhite.html
Paul Gardner MD and Carl Snyderman MD (ENT surgeon), University of Pittsburgh, Pittsburgh, PA - endoscopic approach
http://brainsurgery.upmc.com/meet-the-surgeons/surgeon-profiles/paul-gardner.aspx
Dan Kelly MD and Amin Kassam MD, St. John's Health Center, Santa Monica, CA - endoscopic approach
http://www.neuroscience-institute.com/Meet_The_Physicians.aspx
Edward Laws MD, Brigham and Womens' Hospital, Boston, MA - endoscopic approach
http://physiciandirectory.brighamandwomens.org/directory/profile.asp?dbase=main&setsize=30&dept_id=2419&mkt_display=Y&pict_id=0012795
Please provide feedback. Thanks all!
I have done alot of research and found several surgeons that I understand are very good. I would like feedback as to whether anyone has good or bad experiences with them. The list below.
All of these do the transsphenoidal approach surgery, however some of them do an endoscopic (transsphenoidal) approach which is less known but seems to be much better from my review.
William White MD, Barrow Neurosurgical, Phoenix, AZ - microscopic surgical approach
http://www.bnaneuro.net/Pages/Docs/DrWhite.html
Paul Gardner MD and Carl Snyderman MD (ENT surgeon), University of Pittsburgh, Pittsburgh, PA - endoscopic approach
http://brainsurgery.upmc.com/meet-the-surgeons/surgeon-profiles/paul-gardner.aspx
Dan Kelly MD and Amin Kassam MD, St. John's Health Center, Santa Monica, CA - endoscopic approach
http://www.neuroscience-institute.com/Meet_The_Physicians.aspx
Edward Laws MD, Brigham and Womens' Hospital, Boston, MA - endoscopic approach
http://physiciandirectory.brighamandwomens.org/directory/profile.asp?dbase=main&setsize=30&dept_id=2419&mkt_display=Y&pict_id=0012795
Please provide feedback. Thanks all!
There is also the skullbase institute in Los Angeles. They have a different technique. They are saying there is less risk involved. I talked to them last year. However they don't bill most insurances. One would have to pay them and then bill your insurance.
Ulrike
http://drjho.com/pituitary_surgery.htm
He is the best!
Kim
"I need to share that the success of my surgery, I think, was impacted by thte skill of the surgeon, my insistence on taking octoetride despite my endo and surgeon...not thinking it would do any good...,the location of my tumor...after surgery I slept with an inclince pillow..did not go up and down stairs for 2 days...and all those other little things they said...no clear evidence it had invaded any cavity all though was a macro...
My neurosuregon's and ENT's surgical skills were great...
My ENT's style and communication was great...
the neuro surgeon answered my questions but I always felt that we didn't really connect....
at first this worried me and then I thought of him as a hired gun..I didnt need to be friends with him I need him to get the job done... "
Surgeon is: Dr. Grant Sinson, Froedtert Hospital, Milwaukee
http://www.froedtert.com/PatientInformation/PhysicianSearch/PhysicianSearchProfile.htm?id=2474
"I don't know if you are willing to come to Texas, but Richard Auchus (endo) and Bruce Mickey (neurosurgeon) at Univ. of TX Southwestern in Dallas are excellent. "
I've been hearing from another group that there is some top class research happening at Cedar's Sinai in LA. There's a doc there that is regarded as THE top acro doc in the US but he no longer
Let us know what you decide. sees patients & when he did the office call was $700.
Ulrike mentions Skullbase Institute in LA, CA. I just wanted to say that I did alot of research on surgeons, and looked into Skullbase Institute in CA. I got some negative feedback about them from 2 other surgeons I spoke to, so I think there may be a competence issue and an integrity issue there. Also I had some bad experiences with their admin personnel, and they are very expensive and don't take insurance.
Skullbase uses the "endonasal endoscopic" method - the same method used by the other 3 doctors I listed above (Gardner, Laws and Kelly). Gardner/Snyderman and Kelly/Kassam use the "duo" method where there's a neurosurgeon and an ENT surgeon that do the surgery together. Laws works alone. But I think they are just as competent, if not more than Skullbase. So, that's my update. Hope it helps others.
Best, Sunny
I suspect in the US that it depends on what your insurance will cover. Doesn't affect us here in the UK (medical care is covered through taxation), though it was useful to me that one of the best UK centres for acromegaly is 40 miles from home and was where I was referred after diagnosis. (BTW I met Jon Danzig there while waiting for a day curve test about a year ago.)
We Brits don't wear red coats any more, Rose, so you don't need to fear our invasion :-) (and in a reciprocal manner we welcome any of you at www.pituitarychat.com too!)
John
If you consider coming to France, there is a surgeon with great reputation for that in Paris. He was supposed to do my transphenoidal op. But my case was not interessting (microadenoma with no problems) and he is also a teacher, training students. So I waked up after surgery and discovered that a young guy practiced for the 1st time on my pituitary. Surgery failed, but I still have my 2 ears.
Now to be positive, the view over the Eiffel tower was amazing, from the window of the room.
If your case is complicate, can give you his name :)))