ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: chris75 on January 21, 2011, 01:13:13 am
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Hi Im Chris. Ive just been told that I have AN. Im a soldier in the Army and 29. I guess im fairly young for this but everyone has the trials in life. So like I said Im new and Im not that great at asking questions or knowing the right thing to ask Im a country kid and usually just take doctors at there word because well they are the doctor. I am leaning toward surgery only I know for sure that I will lose hearing to that side do to not having a direct line to the tumor so through the canal is kind of the option I was told. Im hoping to hear back from somebody on the right questions to ask Im not needing to worry about insurance or anything like that Im in hawaii that proves to be a problem but that will be something i know i need to address. Your help would be great thank you all good luck to those about to undergo a procedure and a speedy recovery to those that have undergone.
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Hi Chris and welcome. As I am a contractor for the USAF, first, let me say a very proud "thank you" for your service to this country! :) I have learned so much about our active duty while working for the AF and I commend you for all you do!
Can you please share some of the specifics of your AN (ie: did they give you a size of the AN, its exact location -- ie: in the IAC or sticking out, etc), where you are located, etc, so we can provide better guidance? We're here to help, you are certainly not alone
Again, welcome!
Phyl
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Hi Chris,
Sorry to hear that you had to find us, glad you were able to once the need arose.
If you are in Hawaii, being in the military can actually prove to be beneficial. I was living in Hawaii (as the dependent husband of a Navy retiree) when my AN was diagnosed and removed.
None of the ENT's out in town do AN treatment, everyone there goes to a mainland for treatment. However, if you are in the military there is an avenue you really want to check out prior to deciding the mainland is your only option. Get an appointment with Dr. Mitchell Ramsey at Tripler and talk with him. He removed my AN and I have very minimal after affects. I know that the general attitude toward Tripler is fairly negative but my personal experiences there (I lived in Hawaii and received all my major medical treatment through them for 17 years) were very positive.
As far as what questions you should ask...there is a page on this site at: http://www.anausa.org/index.php?option=com_content&view=article&id=118&Itemid=116 (http://www.anausa.org/index.php?option=com_content&view=article&id=118&Itemid=116) that gives you a great place to start with the questions. I say start because the answers usually generate more questions.
Again, welcome here, sorry you have to be here.
..thanks for being.. migoi
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Hi Chris and welcome to this forum .....
So glad you found us and posted. Migoi gave you a good link for questions to ask a doctor. You might also send for the free ANA materials that will answer many of your questions and it will give you some direction of how to know where to turn for treatment. See: http://www.anausa.org/index.php?option=com_aicontactsafe&view=message&layout=message&pf=4&Itemid=195
Tell us a little bit more about your symptoms, etc.
Many thoughts. Clarice
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WELCOME! You have received some excellent advice - I'm glad that Migoi was able to direct you some since he had his surgery there! Ask anything - we are here to help!
K ;D
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Chris,
Welcome to the forum! This is a great site for info (great job, Migoi!), feedback, venting, questions, etc.
I didn't have surgery at Tripler, but did give birth to 2 children there! (hubby stationed there in 1986-1990). It was a good hospital back then, I'm sure it is excellent now.
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).
No need to rush, as long as your tumor is small. These are slow growing, benign growths on the hearing/balance nerve , also known as skull based brain tumor, or acoustic neuroma. Depends on how much sympathy you would like when explaining to people :)
Hang in there,
Maureen
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Hi Chris! As a Viet Nam era soldier, I thankyou for your service. Just wanted to let you know that as long as your AN is small and stable and you don`t have too many bad symptoms you have the time to make an educated decision on what your going to do. There are many sorces of information including the so many experiences of the great folks on this board. With today`s technology just wanted to give you some positive imput that everythings going to be allright. Best wishes, Mickey
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Thank you all very much for the information and support. As far as specs I was kind of in a little shock and have only had one meeting so far didnt think to ask size or anything basically asked about what treatments there were. I have my first appt with a nero surgeon in feb. Mr Migoi thank you for the information and will look up doctor Ramsey he may have been the one I already saw like I said was a bit of a whirl wind and kind of sluft it off i was told over the weekend by phone, and didnt realize that it was serious or even what it was called till tuesday. I will keep everyone posted again thank you so much for your help. For those of you that thanked me for the service I and all soldiers thank you for your support Mickey especially to you I have great respect for those who served before me you made a great sacrifice and i thank you.
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Hi, Chris and welcome to the forum.
Tim (Mr. Migoi) gave you some very wise advice.
Good luck on your AN Journey and please don't hesitate to ask us anything.
Best,
Jan
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Welcome to the forum. As others have said, you have time to do a lot of research. The information on this site was a great help to me. I did about 100 hours of research before making a decision. The others have given you very good information, so I will not repeat it. But do send for the free materials. They come quickly and have a lot of information. Sandy
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Good Morning Chris & welcome to the AN community. You have received great info. My main reason for commenting was to Thank You for you service. As a Military Mom... One daughter in the USAF, son-in-law in the Navy, daughter Navy vet & son-in-law retired USAF, I really appreciate all of you.
Good Luck on your AN journey.
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Hey Chris75 - check out the discussion thread in the Insurance forum. There is a thread being kept alive by an active duty (or maybe recently retired) military guy. He might be able to give you info on Tricare or best things to ask re: treatment while in the military. See if he will respond to a Personal Msg.... if you click on his name, you can send an email to him...
There also were a couple of threads by military members.... so if you use the search tool, you might be able to find those threads.... I remember a thread started by Greengiant or greengrunt... something like that. I think he was in Hawaii too. But I think he only posted once.
I'm a civilian in Hawaii. The local civilian doctors in Hawaii treat ANs but only occassionally, so a doctor friend recommended that I go the mainland for my surgery. You want to go somewhere that treats these routinely and regularly(either surgery or radiation).... practice practice practice.
See if Tripler will send you to somewhere that has neurosurgeons that specialize in neuro-otology. You can send me a PM, and I can try to answer questions, but I don't know anything about Military healthcare...
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So after meeting with the first nero today I was told when i asked what size the tumor was said it was small right at 2 cm. I was wondering i thought that was medium size was also told to seek gamma knife over surgery. Im still partial to the surgery though
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Chris,
I THINK 2 cm is considered med. This is the frustrating part, trying to figure out what sort of treatment.
Any way you can get second opinion? That will help.
Ask if the AN is near the brain stem, or ask if it is still in the auditory canal.
Keep us posted. There is no rush..... :)
Maureen
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Hey Chris! Stay on top of things without rushing into whatever your decision will be. Get all the information you can and at the same time try to pick the best doctors by doing your homework. At 2 cm I would say your AN is borderline small-medium depending on the rest of deminsions and location. Your first MRI is your guideline. In any case depending on your symptoms, research, next MRI etc. you will probably come up with a gut decisoin for whats best for yourself. Your young and strong and with today`s technology everything will work out fine. Best wishes, Mickey
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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
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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
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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
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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.
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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....
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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
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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.
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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
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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