Author Topic: New guy just finding out!  (Read 8113 times)

OTO

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Re: New guy just finding out!
« Reply #15 on: February 04, 2011, 07:13:46 pm »
Chris75

Do a google search for Gamma Knife Hawaii.   There is a gamma knife center in Honolulu.  I visited their website when I was considering surgery or radiation.   The neurosurgeion who gave a second opinion is affliated with them.   I think one of the neurosurgeons there has a military background.   It might be that Tripler is referring you to a local center for treatment?    Anyway, I think they will answer questions by email.   OTO

GM

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Re: New guy just finding out!
« Reply #16 on: February 06, 2011, 06:05:34 am »
Chris75,

I didn't read how you found out about your AN (sudden hearing loss, balance issues, headaches, etc).  I was asking to find out how it is currently affecting your world wide deployment status.  A little about me...I found out about my AN while I was on active duty in the Air Force...I found it because I failed three hearing tests in a row, (I worked on helicopters and an annual hearing test was a requirement).  I had my AN treated by Gamma Knife at the University of Virginia.  I retired in 2005 after serving 23 years.  I'm the one keeping the thread alive in the Insurance link because as a military member we have different issues to deal with as TRICARE is a different animal.  Finding your AN while on active duty does have its benefits, (convelescent leave, medical TDYs to deal with this issue, military transport (hops) to save on airfare).  You should be given a choice on how you want to treat your AN by the military docs.

 OK...now the hard part...this is something that you will have to get smart on yourself and make a personal decision on how to treat your tumor.  Surgeons will recommend the surgical route and warn against radiation, and radiologists will recommend the radiation route and warn against surgery. This is not the time to just trust the doc and not ask questions....even if the Doc is a a much higher rank than you!  Ask questions, don't be intimidated by rank.  I went to the largest hospitals in the area (to include the military hospitals ) and spent time in their medical libraries.  I researched all routes of treatment (watch and wait, surgery, and radiation) and made my personal decision to go radiation as it met all my personal deciding factors of 1) I wanted the method with the least amount of complications, 2) I wanted to treat it only once (hopefully), and 3) I wanted to return to duty as soon as possible.  I suggest that you start off with making a list of YOUR personal deciding factors first and then research the treatment methods.   Caution: the internet can litterally overwhelm you with info....but you'll notice that a lot of it is similar and some is dated.  Personally, I didn't use any info that was over 5 years old (from the internet and the libraries).

Talk with family and close friends about your decision, and get feedback from them...for me prayer helped in making my decision as well.  And now the easier part....once you make your decision on how to treat this...you will feel a feeling of peace...making the treatment decision is truely the hardest part.  Whatever route you choose we will all be here to offer our words of support...we've been there.

GM
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!!

moe

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Re: New guy just finding out!
« Reply #17 on: February 06, 2011, 09:09:00 am »
Great words of advice from a military member who has  "been there, done that!"

I especially like the part about not being intimidated by rank and being your own advocate.
Well said,GM!
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

chris75

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Re: New guy just finding out!
« Reply #18 on: February 10, 2011, 12:55:20 pm »
I met with the possible surgeon yesterday was told there is not to many doctors qualified in the military to do the surgery. Im young and feel I would bounce back well. I may have a chance to do a compassionate re assignment to ft lewis does anyone know of a Dr Crawford, James V at madigan Im trying to find info to research him but really not to much has come up.

OTO

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Re: New guy just finding out!
« Reply #19 on: February 10, 2011, 09:58:48 pm »
Chris75 -

Take a look in the Post-Treatment section of the forum.  There is a thread posted by Greengiant71.   He was a PFC in the 2-25 AVN.  I think he was diagnosed at Tripler also.   His post said that he is now medically retired from the Army.   Maybe you can contact him by personal message and find out where he got his surgery, and the outcome and side effects.  It sounds like he is having some balance problems.   His follow up treatment is with the VA.    Suggest you contact him for recent experience.

Check out any posts by "Moe" and contact her by personal message.   Her posts say she had her surgery with Dr. Crawford at Madigan Army Hospital....

moe

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Re: New guy just finding out!
« Reply #20 on: February 11, 2011, 08:55:36 am »
Chris,
Yes my surgeon was Dr. James V Crawford :
from previous post

 I had my tumor removed at Madigan Army Med Ctr in Tacoma WA. Excellent surgeon (trained at House Ear Institute in LA, which is world renowned), excellent hospital. (Just in case you have to go to mainland, would highly recommend Dr. Crawford there).


My tumor was complicated. He basically saved my life, and I have no post op issues other than the tinnitus and facial issues, which were unavoidable. I can PM you his email address.  I followed a friend from Alaska who came here for the surgery. She had no facial nerve issues, just hearing loss. He is compassionate and has great bedside manner. I'm surprised they do not know of him. People come from all over. If you DO need to consult with him, your doctor there should be able to put in a referral into the system.

Be assured that there IS a very good surgeon out there for you if need be :)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

chris75

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Re: New guy just finding out!
« Reply #21 on: April 06, 2011, 02:49:07 pm »
Thank you so much for replying. I have been off here awhile still trying to get to the mainland Im happy to hear that he is good. I had a freind that saw him for something else and said he has a lot of passion for the patient. I have decided that he is who I would like to do my surgery he is currently gone for the month but his staff alone has put confidence in my descion more then tripler where it has seemed to be a fight the whole way. Thanks again.

moe

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Re: New guy just finding out!
« Reply #22 on: April 06, 2011, 09:35:56 pm »
Dr. Crawford's staff is great and his nurse ZOE is very helpful.
Please send me a message if you would like more info about everything. He IS very compassionate and a gifted surgeon too. I'm due for my 5 year MRI this June.
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

BrandyDWade

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Re: New guy just finding out!
« Reply #23 on: April 22, 2011, 01:23:01 pm »
Hi!  I'm 29 years old and just found out about my AN in January.  So I know how your feeling right now!  I had surgery at the House Ear Clinic on April 6th.  I can not recommend them enough.  I had Dr. Friedman.  The whole experience went so well.  Here it is just two weeks and two days after surgery and I am at home and feeling great!!  Please contact me if you have any specific questions about HEC or surgery or anything!  I had so many great people help me out and share their experiences with me.  I can't wait to return the favor!

Brandy Wade