Author Topic: Doctors in Washington DC area  (Read 4944 times)

CC

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Doctors in Washington DC area
« on: August 10, 2005, 12:17:43 pm »
I am a 46 yr old female just diagnosed with AN.  My growth is 1.8x2.0x1.5.  I have only minimal hearing loss and some pressure in the right ear, and no balance or other problems.  I have been referred to a neuro-otolaryngologist called Dr Jeffrey Kim at Georgetown Hostpital but until I see him won't know whether he's actually performed any AN removals.  Has anyone had AN surgery with Dr Kim and/or does anyone know of any surgeons in the DC area who are fabulous.  Since being diagnosed yesterday I have been online and read about all the complications (facial, hearing, etc) that can occur with removal and as scary as it is, I'd like to minimise complications if at all possible.  The ENT also talked about gamma knife as being one possibility.  Finally I have absoluitely no idea of how long surgery will take.  Can some of you give me an idea please.  I have had some adverse reactions to aneesthetics in the past (my BP drops to 70 over 40 and my body turns cold) and if the suregery will be a long long one I will need to work out how they're going to get around this.  Sorry about the 100 questions but I want to be as informed as possible as I prepare to embark on this rather dramatic medical path.   
« Last Edit: August 10, 2005, 12:48:55 pm by CC »
CC
3cm AN
CK Oct 05
with Dr Chang at Stanford

GM

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Re: Doctors in Washington DC area
« Reply #1 on: August 10, 2005, 08:27:30 pm »
C.C.   see my response to your other post...

Gary
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

JJ

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Re: Doctors in Washington DC area
« Reply #2 on: December 12, 2006, 02:03:00 am »
I don't know of any specific doctors in the DC area, but I do know that Georgetown University has a Cyberknife center.   Cyberknife is often used to treat acoustic neuromas, particularly those under 2cm in size.  I recently had my 1.9 cm AN treated by Cyberknife in Florida.   Georgetown can probably refer you to neurosurgeons in the area.  2cm is the "magic number" with AN's; any larger than that and they become more difficult to treat, so you want to contact somebody soon.  Hopefully, they can provide you with some referrals.

Hip

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Re: Doctors in Washington DC area
« Reply #3 on: January 02, 2008, 10:06:46 am »
I was diagnosed with an AN of 2.5cm in diameter in May 2007.  In late August 2007, after considering many choices (do nothing, gamma knife, surgery, etc), I chose the sub-occipital surgery option knowing that I will have facial paralysis, deafness and loss of balance.  The 8-hours long surgery option is the only option that can remove the tumor 100%.  Over 4 months after the surgery, I have overcome my loss of balance thanks to the PT who specializes in vestibular treatments.  My facail paralysis has gotten better.  I have some movements back but I still have the "crooked" smile.  If full movement is not back by April this year, I will try accupuntue or cosmetic surgery.  My deafness is permanent so I will have a bone-anchored hearing aid device installed (date to be determined after my May consultations with my neurosurgeon and my ENT surgeon).  I also have some emotional changes (hot-tempered, speak my mind, and opinionated) that I am coping with with help from my wife, my family and members of an AN support group.

I recommend that you contact Dr. John Patrick Carey (ENT surgeon) and Dr. Rafael Tamargo (neurosurgeon) both of whom work at the Johns Hopkins University Hospital in Baltimore.  Dr. Carey is an expert on brain tumors in the 7th cranium area and Dr. Tamargo is one of the best neurosurgeons in the USA.  Dr. Tamargo has operated close to 400 AN patients without any complications or fatality.  He is also one of the surgeons who succesfully removed 2 Siamese twins co-joined at the head.  You could look both Dr. Carey and Tamargo up on the JHU hospital website.

Whatever method you decide to go with, I recommend to do it quickly and to have it done at JHU Hospital since ith is the number 1 hospital in the USA (as reported by the US News & World Report magazine).

Good luck.

ppearl214

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Re: Doctors in Washington DC area
« Reply #4 on: January 02, 2008, 10:13:14 am »
I was diagnosed with an AN of 2.5cm in diameter in May 2007.  In late August 2007, after considering many choices (do nothing, gamma knife, surgery, etc), I chose the sub-occipital surgery option knowing that I will have facial paralysis, deafness and loss of balance.  The 8-hours long surgery option is the only option that can remove the tumor 100%.  Over 4 months after the surgery, I have overcome my loss of balance thanks to the PT who specializes in vestibular treatments.  My facail paralysis has gotten better.  I have some movements back but I still have the "crooked" smile.  If full movement is not back by April this year, I will try accupuntue or cosmetic surgery.  My deafness is permanent so I will have a bone-anchored hearing aid device installed (date to be determined after my May consultations with my neurosurgeon and my ENT surgeon).  I also have some emotional changes (hot-tempered, speak my mind, and opinionated) that I am coping with with help from my wife, my family and members of an AN support group.

I recommend that you contact Dr. John Patrick Carey (ENT surgeon) and Dr. Rafael Tamargo (neurosurgeon) both of whom work at the Johns Hopkins University Hospital in Baltimore.  Dr. Carey is an expert on brain tumors in the 7th cranium area and Dr. Tamargo is one of the best neurosurgeons in the USA.  Dr. Tamargo has operated close to 400 AN patients without any complications or fatality.  He is also one of the surgeons who succesfully removed 2 Siamese twins co-joined at the head.  You could look both Dr. Carey and Tamargo up on the JHU hospital website.

Whatever method you decide to go with, I recommend to do it quickly and to have it done at JHU Hospital since ith is the number 1 hospital in the USA (as reported by the US News & World Report magazine).

Good luck.
Hi Hip and thanks for sharing this with us.  Great recommendations and I appreciate you sharing this with us.

Based on size and location of AN and options available, unless it's an emergent situation, usually we do not recommend a "do it quickly" but to take time available to research all options so all here can be the best informed patient they can be.  there are many qualified drs and treatment options available and I hold your opinion of your team and location with extreme high regard... as I know others will and look forward to others sharing other option/opinions as well.

Hip, thanks again for sharing.... great to know you are helping to look out for others that now walk with us in this journey.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

goinbatty

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Re: Doctors in Washington DC area
« Reply #5 on: January 22, 2008, 01:30:00 pm »
I recently underwent CK at Georgetown (Dr. Gregory Gagnon), and was very impressed.  Prior to CK, had very minimal hearing issues.  I also consulted with Dr. Walter Jean at Georgetown, neurosurgery, but had already made up my mind for CK.  I spent the entire year after being diagnosed researching treatment options.  So far, so good although I realize I'm early on in the post treatment phase.  If you're leaning toward this facility and surgeons, my only sugestion would be to ask if they have prior patients that would be willing to talk with you about their experience.  That, and continue to research until you're comfortable with the treatment option you select.  Good luck
Sandra
1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

 


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