Author Topic: My situation  (Read 6315 times)

Brian T

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My situation
« on: March 27, 2013, 01:43:46 pm »
Hey everyone, new member.  I just found out a couple weeks ago from a MRI that I have a "2 cm" AN in my right ear.  I've been doing my research while I'm waiting for Tricare to get back to me with my referall.  I'm sure everyone has their reasoning's of going one way or another but so far I'm leaning towards CK.  I guess a little background might help describe my decision so far.  I'm 30 years old, I'm currently in the Air National Guard as a flyer (a person who flies for a living) and I'm an airline pilot.  Both of which are a passion and can promise anyone that if they were taken from me would have a devastating affect on my quality of life.  Is there anyone else out that was in a similar situation (age & occupation)?  I'm trying to get as many facts as possible before I meet with any military docs who tend to a be a bit pushy it seems towards microsurgery.

Brian Thibodeaux

Shelley A

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Re: My situation
« Reply #1 on: March 27, 2013, 07:08:32 pm »
Hey Brian,
I am 32 and my AN is about 2.5cm.  I am having surgery on April 5th.  We decided to go with surgery because it is growing and I am young and healthy.  We chose not to do radiation because of the uncertain long term effects of it.  I however, am not a pilot.  I am a stay at home mom.  The best advice I can give you is to research as much as possible and talk to multiple doctors.  Don't rush into anything.  I will be praying for you!

Shelley

Brian T

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Re: My situation
« Reply #2 on: March 28, 2013, 10:09:11 am »
Thanks for the reply Shelley.

Sorry I should have put more of my current medical condition in the first post.  I was in a rush out the door.  My symptoms as of now are mild hearing loss.  What I mean is I can hold a conversation with my affected ear, sometimes its a bit harder to understand a person if they don't enunciate very well.  I also have tinnitus, but thats it.  I have never had a problem with balance, headaches or facial numbness.

My concern with microsurgery is I will have induced vertigo and persistent facial paralysis.  I don't really know how if at all the paralysis will have my medical revoked.  But the vertigo will most definitely be a career ending condition.

Whats the long term concerns of radiation therapy? Is it they just don't know what might happen? Do they have any ideas?  I wonder if it would be fixable via microsurgery later (possible innovations due to research)?

Thanks everyone,
Brian Thibodeaux

mk

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Re: My situation
« Reply #3 on: March 28, 2013, 10:34:17 am »
Hi,

The only person I can think about right now who was somehow involved in flying is Gary (GM). He had GK in 2003.

http://www.anausa.org/smf/index.php?topic=38.msg261#msg261

You can try to contact him.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Chances3

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Re: My situation
« Reply #4 on: March 28, 2013, 11:20:26 am »
Hi Brian,

You've asked a very difficult question.  I think it's very challenging to decide how to deal with our AN when our careers are involved.  I chose surgery at the age of 54 because I wanted some finality to my tumor.  I had two top surgeons in NYC with years and years of experience, unfortunately for me, my recovery wasn't the best, but that could be related to my age.  I have spoken to many people who have had great results from these doctors.  Overall from what I have learned from talking to other members on this site, there can be good and bad results choosing either procedure.  Now that doesn't seem to help, so here is my advice to you.  Research research research as much as you can.  Find the best doctors available to your health plan for both procedures, and than make the best health care choice for yourself.  I wish you the very best for your future.

God Bless.

millie

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Re: My situation
« Reply #5 on: March 29, 2013, 07:52:25 pm »
What Chances said is true, Brian.  I'll pray for your decision.  Mil

TexasSprinter

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Re: My situation
« Reply #6 on: March 29, 2013, 09:59:46 pm »
Brian--first of all, thank you for your service.  Based on the research I did and what the doctors told me, there is a very small chance that radiation could somehow turn benign tumor cells into malignant tumor cells--cancer--over some long period of time.  I've heard everything from 1/1000 chance to "a fraction less than 1%"  Perhaps others can weigh in on this.  I've also read that the data on this is inconclusive.  The other risk to radiation that is more well established is that if it doesn't stop the tumor from growing, it makes a later surgery more difficult (higher risk of hearing loss and facial paralysis) because of the scar tissue left behind.  I'm not advocating against radiation because every option has its own risks.  But at least these are the things that were on my mind before my AN surgery.   

mesafinn

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Re: My situation
« Reply #7 on: March 30, 2013, 07:28:52 am »
Hi Brian,

I'm glad you found us here.   I was diagnosed nearly six weeks ago and have spent that time reading, researching, and thinking.  Like many here, I've spoken to docs across the country and usually received conflicting advice.

One thing most doctors have told me is that if I had a symptom now, I would likely have it later.  In other words, if I chose microsurgery or radiosurgery, I would likely have the same tinnitus post-treatment that I had before treatment.   A doc I spoke with the other day said this was true with vertigo, too (or headaches). 

If you don't have vertigo now, there's a good chance you won't have it later.  Having said that, if you choose GK (what I've determined to do), when the tumor possibly enlarges post-treatment, it may induce vertigo.  Similarly, the surgical procedures you chose could result in vertigo.  I wish we were here to offer you guarantees, but there are none.

As you will consistently hear here, read, read, read and then make the best decision for you.  I'm sorry you're facing this challenge at your age.  But I'm also glad you "caught" your AN before it got even larger and you became more symptomatic.  Some may advise watch and wait--another consideration--but it's all up to you.  That's both comforting and distressing, I know.

We are here to help and support!

P.
Oct 2012:  Constant Pulsatile Tinnitus
Feb 28, 2013: Dx AN 1.4 cm X .9 mm
April 19, 2013:  GK at UPMC w/Dr. Lunsford

Some things in my life need to matter less, and other things in my life need to matter more.  So yes, I'm taking this as a "lesson learned experience."

Brian T

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Re: My situation
« Reply #8 on: April 02, 2013, 06:02:01 pm »
Thanks for all the replies guys.  I'm still waiting on Tricare to get back to me on my referral...starting to think they dropped the ball since they lost the government contract.  Anyways, been getting in as much reading as I can.  Trying to know a little about alot I guess you can say so when I meet up with the docs in a few weeks I'll atleast have some clue as to what they are talking about.  I'm still highly interested in radiation, seems to be the best chances of preserving my hearing and balance.  But I won't completely dismiss any treatment option.  Thanks again everyone.

Oh yea one more question.  Not actually treatment related but I seem to have a few peoples attention here.  7 years ago I went completely deaf in my right ear.  Military docs looked at it couldn't see anything.  Assumed it was some kind of ear trauma due to a rapid decompression in the aircraft I had experienced the day before.  Anyways, they decided to observe my condition.  They didn't order steroids or an MRI and I didn't know any better at the time.  So a week later I actually started getting my hearing back and as  far as the military was concerned case closed.  My question is has anyone had or known anyone who has had symptoms hit like that and then disappear?  I mean I have a slight hearing loss and tinnitus in my right ear, but thats it now.  Just an oddity I was curious about.

Brian

jaymatt

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Re: My situation
« Reply #9 on: April 03, 2013, 04:01:57 pm »
Hi Brian,

I am 32 and have a 1.5 cm right side AN. In searching around for young people who have this tumor, I met a guy who is 34 and is also an airline pilot. When his AN was found, it measured 3.4 cm. He had translabrynthe surgery, and after a little physical therapy, is back to normal other than not having hearing. He is also still able to fly. So I hope that gives you hope.

mk

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Re: My situation
« Reply #10 on: April 03, 2013, 07:20:56 pm »
Episodes of sudden hearing loss (going from perfect hearing to deaf overnight) are not uncommon when having an AN. They usually resolve with steroids, although we had a few cases of people who had their hearing return even without medication. These episodes are attributed to the sudden loss of blood supply to the nerve, due to tumor induced edema. If the blood supply returns soon, before the nerve gets damaged irreversibly, hearing is restored. Since your AN is 2 cm now, it would be quite small seven years back, and perhaps not big enough to cause irreversible damage. Or, it could be totally unrelated, as you mentioned. I guess there is no way to get a definitive answer, but I am glad that your hearing was preserved.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

grammyslim

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Re: My situation
« Reply #11 on: April 03, 2013, 08:15:31 pm »
Hi there!

Thank you for your service.  I too am a Veteran. 

I had radiation treatment in May 2012.  My choice was made after reading and talking to both a surgeon and radiation oncologist in Houston TX.  I chose radiation because of my age and the fact that I had already lost my hearing.  In speaking with the surgeon I directly asked him about surgery after radiation and he said if  he had to do it after radiation it was doable with the same risk as without radiation.  Tell you after he explained the entire surgery process - it confirmed my choice of radiation.  Four months post op I suffered from semi-facial spasms but basically are gone now.  I will be having my 1 year MRI soon and know it will be a good report.
My friend who used my radiation doctor (Aug 2012) had no facial spasms and her hearing is still in tact. We are about the same age.  The issues she had prior to radiation are no better/worse so I feel we both had success with the radiation (single treatment).
If you would like to talk - let me know.
1.4 cm diagnosed 01/12
significant hearing loss rt side
total balance loss rt side - AN side -
left side already compensated (who knew)
Radiation completed May 2012 - all systems are GO -- so happy I chose radiation near home.

mindyandy

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Re: My situation
« Reply #12 on: April 04, 2013, 06:29:38 am »
Hi there. I was 29 when my AN was discovered.
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

robinb

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Re: My situation
« Reply #13 on: April 16, 2013, 07:27:12 am »
Hi Brian-

In my experience, docs that do surgery are pushy to surgery. Look at all options and give your self time to absorb the info and don't let anyone push you to one treatment over another. See my posts under Radiation. The top docs in the country will review your MRI at no charge and give you a phone consult as well. If you want to chat, just PM me.
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

Bonnie B.

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Re: My situation
« Reply #14 on: April 16, 2013, 10:35:47 am »
Hi Brian,  I totally agree with Robin.   Take your time and gather all the facts.  Also, you will probably being seeing Neurosurgeons, radiation oncologists and neurotologists.    I opted for the one time Gamma Knife surgery.  I took great pains in making my decision but, for me, I made the correct decision.

Good luck and keep us posted.
1.7 cm AN
diagnosed January, 2012 - no hearing L ear
GK surgery done March 15, 2012 at Yale New Haven Hospital, New Haven, Ct.
Dr. Chiang and Dr. Yu