Author Topic: Thanks to all who share their experience  (Read 3216 times)

BillF

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Thanks to all who share their experience
« on: October 18, 2007, 09:38:37 pm »
After ten months of lurking around this site and 10 hours post GK, I thought I owed it to all of the good people here who are so willing to share and help others to say thanks.

My story is pretty typical,  hearing loss, tinnitus, and balance issues for a while till my doc finally said lets see the ENT.  Followed by hearing test, MRI and the visits with the various Docs and a lot of conflicting info and confusion.  In the middle of it all I discovered the ANA site and this group.  The great mix of strong personal opinions and hard information and references made the decision making process so much easier than it might have been.

I knew early on that I did not want to have open surgery at my age (59) but the radiosurgery choices seemed equally puzzling.  The debate here over linac, GK, and CK ended up leading to so much solid information that in the end not only was the choice easier for me to make but I ended up highly confident that I was doing the right thing for me under the circumstances  (approx 8mm x 9mm AN). 

In the end I felt that the technology and experience at our small (but excellent for it's size) Med center in Burlington, Vermont did not offer the lowest risk possible and chose, in part due to the recommendation of the local radiation oncologist,  to have Gamma Knife with Dr. Kodziolka at UPMC,  Pittsburgh. 

Ten hours out is, of course, small indication of the future, but at this point I could not have hoped for a better outcome.  The entire staff, nurses, secretaries, and Doctors  were so professional and helpful that I barely remembered I was hundreds of miles from home.  (They even had special rates and breakfast at a nearby hotel within walking distance).

Happily, the head frame was much less an issue than I feared.  Thick skull maybe. They worked hard to complete the process quickly so that you do not sit for long with it on   (20 min MRI - 30 min GK).  After removing it I had a headache and some soreness, but with some tylenol I was fine by the time they let me go an hour later.  I felt normal enough that we went to two museums in the afternoon and out for dinner at night.  Forgive my giddy prose, but after ten months mulling this over and not knowing exactly what the next 18 months may bring, I am just happy to have put this first step behind me.

Anyway,  as I said, my real purpose for writing was to thank all who post here for doing so.  And thanks to nikynu from Vermont for returning my call and giving encouragement.

aardvark

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Re: Thanks to all who share their experience
« Reply #1 on: October 18, 2007, 10:27:00 pm »
Congratulations!  And welcome to Post-GK (and post-lurker) status.  It's a terrific reason to feel euphoric.

Adrienne
1.5cm X 1.0cm Left Side AN  Dx 8/05
CK at Stanford 9/05   Drs. Chang & Gibbs

4cm in Pacific Northwest

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Re: Thanks to all who share their experience
« Reply #2 on: October 18, 2007, 10:38:31 pm »
Bill,

Oh we like "giddy prose" ;D

Welcome aboard the AN journey ship. Life is never dull here and there are lots of fellow sailors to help you out… you just got to watch out if they are out walking in the wind  ;) … or if there are pirates lurking about.   :o Those will be the ones with eye patches (and teddies) – arby dar! ::)


We are an AN family that laughs, cries and celebrates together.  Of course I am sorry for the reason you have joined us- but WELCOME! You will find lots of support here – so glad you finally stopped "lurking about"  ;D , after 10 months, and joined us.

Cheers,

4 :)
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

ppearl214

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Re: Thanks to all who share their experience
« Reply #3 on: October 19, 2007, 07:35:59 am »
Bill,

Hello! Welcome! Congrats on being a "postie" (post-treatment) and most of all... wishes for continued wellness.

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

4cm in Pacific Northwest

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Re: Thanks to all who share their experience
« Reply #4 on: October 19, 2007, 10:00:16 am »
Bill,

Just in case you have written me off as "super weird"

Here is thread I was referring to.

http://anausa.org/forum/index.php?topic=5183.msg47838#msg47838

You have to laugh throughout all this- it is what wil keep you sane ;D (and have others convinced you are not  ;))

Cheers,

4
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

ppearl214

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Re: Thanks to all who share their experience
« Reply #5 on: October 19, 2007, 12:19:48 pm »
You have to laugh throughout all this- it is what wil keep you sane ;D (and have others convinced you are not  ;))

Cheers,

4

4, heck, if I wasn't crazy, I'd be insane! ;)  And yes, laughter is certainly the best medicine!

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

Sheryl

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Re: Thanks to all who share their experience
« Reply #6 on: October 19, 2007, 01:59:53 pm »
Bill - you sound like my hubby - took him ten months to decide how to handle his meningioma regrowth - benign but different from an AN.  He decided on CK and once the decision was made, we felt life does go on!!  The treatment was done at the Beth Israel Deaconess Hospital in Boston and we couldn't be happier (so far almost three weeks out) with the staff, the hospital, and the technology.  They even let me in the room where all the cameras and computers are and explained what was going on.  Ironically, I have been a "wait and watcher" for a 9th cranial nerve schwannoma (sort of like an AN) for 6-1/2 years - only 3 mm of growth in that time with hardly any symptoms.   We, too, have many people to thank for their help, concern, and "hand holding" through this. 
Hope your good news continues,
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

janz

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Re: Thanks to all who share their experience
« Reply #7 on: October 22, 2007, 08:58:13 am »

So glad to read about your decision Bill. And I am in complete agreement with your choice!!

I am one year post Gamma Knife treatment for my AN wth Dr. Lunsford at UPMC in Pittsburgh. I researched the many diffrent options and appreciated too all the wonderful information on this forum.

Hope you are doing well.
Jan
2 cm AN diagnosed April 2006
Gamma Knife August 2006
Dr. Lunsford, University of Pittsburgh

OTO

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Re: Thanks to all who share their experience
« Reply #8 on: October 22, 2007, 09:35:29 pm »
BillF
Congratulations on being a "postie"   Best wishes for a full recovery...