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!
Granin
I live in Tennessee. I chose, after resesarching some of the hospitals and doctors you mentioned, to go to Vanderbilt University Medical Center in Nashville Tennessee because they would write off much of my surgery due to grants. They did: I'm paying about $1400. Even though I have insurance, I was still going to have a very hefty bill to pay at the other hospitals, too much for a middle aged widow to handle. My rare diagnosis got me the top docs in every department and quite a bit of attention. (Well, that's ONE way to get attention at my age! LOL) I had done my research and insisted that I wanted the endoscopic transsphenoidal surgery or I was going somewhere else. The Chief of Neurosurgery finally gave up his opportunity to do the older style surgery under the lip to a younger neurosurgeon named Dr. Kyle Weaver whom I immediately liked for his frankness and good humor, and I got the surgical approach I wanted with the help of their top ENT surgeon. They were all very excited at the followup 6 weeks later, believing they had gotten all the tumor (I knew in my body there was still a presence), but the surgery itself went extremely well with no complications at all and a definite immediate improvement, and I actually have no regrets in choosing Vanderbilt over a more heavily advertised hospital further away. I really couldn't ask for better treatment on the part of the staff, surgical/nursing, etc. Their specialty at Vanderbilt is Cushings and Growth Deficiency. Their Endocrine/Diabetes department is a Center of Excellence. I figured surgical-wise, probably a pituitary tumor is a pituitary tumor. It's the expression of it as Acromegaly that's the issue when it comes to getting an Endocrinologist. My endocrinologist is the head of the department and worked under Dr. Laws, and actually asked to be my endocrinologist, but since they specialize in diabetes I'm not quite ready to relax and give over the reins of my treatment just yet, so I keep on reading and trying to stay on top of this thing. I do go to the Endocrine/Diabetes Clinic there, about 50 miles from home, every month for my injection when my insurance would pay to have a nurse come to my house (!) just because it's so much fun to see those folks.
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