Author Topic: Info on Shands  (Read 8047 times)

macintosh

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Info on Shands
« on: November 14, 2006, 12:08:02 am »
I'm newly diagnosed (7-8 mm), strongly leaning to radiosurgery, and I'm going to Shands at the U of Floriida for a consult. Anyone have any advice or firsthand info on the people there? There is an article in the Journal of Neurosurgery in Nov. 2006 by William Friedman (and others) at Shands that says quite unequivocally that radiosurgery should be the standard treatment for all ANs up to at least 2 cm. There is also an accompanying editorial by someone from UVa supporting this conclusion. Ther article gives extensive data on Shands results over the past 5 years. The numbers don't seem to be as good as some others I've seen claimed for other sites (Hopkins,Stanford etc), but the data looks more thorough than anything I've found yet for anyplace else. If anyone with more background than I have can give an evaluation of this article, I would be grateful for that too. Sorry I don't know how to make tinyurls, but if you Google <Friedman Journal Neurosurgery>, the first result will take you to the journal where you can get the article as a free PDF.

FlyersFan68

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Re: Info on Shands
« Reply #1 on: November 14, 2006, 09:23:09 am »
One of the considerations that led me towards surgery was the fact that I lost considerable hearing prior to treatment. I wasn't very familiar with Cyberknife then (2 1/2 years ago) so I'm not sure if it was even available. Anyway, I was concerned with GK destroying the remainder of my hearing over the next few years while still being stuck with the tumor inside. This is where being content with tumor control comes into play. I believe radiation is a good option for just about anyone at any age but also believe it must properly suit the needs, desires and realistic expectations of the AN patient. For patients with inoperable tumors I believe radiation is a blessing. Even for those with TN. In a way we are lucky to have more than one optin and lucky these are benign. However, we are unlucky to be the one in many to ever develop these tumors. It is mentally exhausting and often times physically challenging. I believe one should not consider radiation if they don't have the patience (something I tend to lack). Many have said on this very board that it's a personal decision and I couldn't agree more! Waiting & Watching, Endoscopic, Radiation, Surgery...Whatever suits your needs! I would like to meet someone that says all four are reasonable options! :-\

vcschaub

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Re: Info on Shands
« Reply #2 on: November 14, 2006, 04:11:36 pm »
Both Dr Friedman and Dr Foote from the University of Florida spoke at last year's ANA symposium in Orlando. Dr Foote spoke about radiosurgery and Dr Friedman about regular surgery. Both spoke well and gave good information. They are both highly regarded and very nice.
6mm
Middle Fossa November 8, 2005
Drs Brackmann and Hitselberger
House Ear

Larry

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Re: Info on Shands
« Reply #3 on: November 14, 2006, 04:26:17 pm »
Interesting and I wish I was told about these options before i elected to have surgery!


laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

Battyp

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Re: Info on Shands
« Reply #4 on: November 14, 2006, 08:50:58 pm »
I know some one who had surgery with Friedman a few years ago for an AN.  She's doing great now.  He started spearheading the gamma and when I called to see about an appt I was told I had to send my records and apply for an appt.  I didn't have the time so I by passed him.  From what my surgeon at Moffitt said...if you wanted radiosurgery..that was the person to see.  The nurse told me the same thing independently of the Dr but added he's a short man with short man attitude.  Kilroy had treatment at shands...maybe he can give you more feedback on who he dealt with.

All the best to you!

Kilroy1976

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Re: Info on Shands
« Reply #5 on: November 14, 2006, 10:33:09 pm »
Just for the public record, my treatment was supervised by Dr. Foote. I've never met Dr. Friedman, although I suppose he may have been one of the several "men behind the curtain" while I was having the radiosurgery.

If Dr. Friedman is in charge of surgeries at Shands, it seems like he's really going against the grain by recommending radiosurgery so highly. Here we might be seeing one of the cases where the neurosurgeons and radiosurgeons work very closely together and benefit from each others' knowledge and expertise. For my money, there outta be more of that and less rivalry.
1.8cm AN
Linac
December 13, 2005
Shands Hospital--University of Florida

Battyp

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Re: Info on Shands
« Reply #6 on: November 15, 2006, 09:33:38 am »
Friedman did microsurgery but from what I understand switched to radiosurgery a few years back and is one of the pioneers of it at Shands.  He did micro on a friend of a friend who had an AN a few years ago (I know more than 2 not sure exactly how long ago).  When I contacted his office after my diagnosis I was told he only did radiosurgery and I had to have microsurgery.

Both the people I know who had their surgeries there did very well, both back to work in their given professions.  one is a physical therapist and one is an engineer at nasa.  They didn't jump right back into work but they are there!  (more than I can say for me  LOL)


klg31728

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Re: Info on Shands
« Reply #7 on: November 20, 2006, 03:20:39 pm »
Hi,

I had radiosurgery at Shands on February 1, 2000.  Read the post I just made under General Discussion (CD of MRI).  If you have any questions, I would be glad to answer them.  Hope everything goes well for you.

Kathy
Kathy G.
Surgery 7/97
CSF Leak and another surgery 12/97
regrowth 1/2000
Radiosurgery 2/2000