Author Topic: Made my decision  (Read 7517 times)

davjack

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Made my decision
« on: December 14, 2009, 10:26:37 am »
Did I mention I've made my decision? I'm going for the radiation. I go to see Dr. Antonelli at Shands on Dec. 21. I'm way too big of a coward to get the surgery. Although the thought of having my head strapped to a table in a plastic Mexican wrestler's mask isn't thrillng me either, but hey I gotta butch up here.

It's absolutely true that when you make the decision, you feel better. Better, not great, ok. Great would be if they told me, "Hey Lumpy has shrunk by 90%!" Now that would be great. I was so scared when I found out Lumpy was inhabiting my "hayd" that I couldn't eat (lost 10 lbs) and couldn't sleep. But now I'm happy to say I've put on about 3 or 4 lbs and am sleeping pretty good.

Hope everyone can put their lumps aside for the holidays and enjoy every day as it comes. Happy Holidays Everyone!
DJ
Lumpy is 1.3cm...am now in W&W mode since Dec. 2009

epc1970

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Re: Made my decision
« Reply #1 on: December 14, 2009, 11:47:17 am »
DJ
I happy to hear that you have a plan for lumpy and that he will be meeting his demise very soon....what a great Christmas gift for you! Good  luck and let us know how you do.
Erin

Captain Deb

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Re: Made my decision
« Reply #2 on: December 14, 2009, 12:37:14 pm »
Yo DJ!! (I am a DJ, too--it was my nickname all through HS and college) Just wanted to let you know that you are doing the right thing going the radiosurgery route.  I know it is an agonizing decision to make and the least-informed person of all has to make it--US!!!  My own surgery changed my life, disabled me and made me lose a lucrative art career due to issues with headaches, which still plague me today.  There is so much more information out there today than there was 7 years ago, when I was in your shoes with about the same sized Lump.

Best of luck to ye, ye wench! Keep surfin', too! I was a surfer(not very good) and a windsurfer (really good) when I lived in the Caribbean a few years back.  Today I try not to dwell on what I can't do, but try to focus on what I can do.  I've done a little boogie-boarding post-op and some sailing, too.  There is life after an AN.

Best Wishes!

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Dan

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Re: Made my decision
« Reply #3 on: December 14, 2009, 12:49:40 pm »
DJ

Your so right, when you have made the decision you can slowly start concentrating on other things.  Congradulations on making the decision.

Dan in Germany
US Army Retired, age 51,  residing and working in Germany.
Retrosigmoid 21 Sept 07 left side 1.76cm AN, Prof. Mann, Uniklinik Mainz Germany

CHD63

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Re: Made my decision
« Reply #4 on: December 14, 2009, 12:55:01 pm »
DJ .....

So glad you have made your decision ..... it can be a very agonizing part of this whole mess.

Deb .....

I am so so sorry you are having to deal with ongoing, disabling headaches ...... it is just not fair.  For the newly diagnosed and/or lurkers on here, not everyone who has surgery has this unfortunate result Deb had.  There are many of us on here who have come through surgery without the long-term scary after effects.

Best thoughts to both .....

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Jim Scott

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Re: Made my decision
« Reply #5 on: December 14, 2009, 05:14:47 pm »
DJ ~

Congratulations on making your treatment decision.  The best part is that you can stop worrying over what you'll do with your AN.  True, you still have to go through the procedure but I'm pretty sure you'll be posting messages telling us how (relatively) easy the whole thing was.  Besides, as you noted, it beats having your head cut open.

FYI: If you choose to keep it, the mask can be quite useful when next Halloween rolls around.  ;)

Jim     
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

davjack

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Re: Made my decision
« Reply #6 on: December 14, 2009, 05:28:41 pm »
Really?! I can keep the mask??? Awesome! I'm going as Samson next Halloween. Remember Samson vs. the Vampire Women?
http://www.atlasdvds.com/apix/thr_samsonwax.jpg
DJ
Lumpy is 1.3cm...am now in W&W mode since Dec. 2009

leapyrtwins

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Re: Made my decision
« Reply #7 on: December 14, 2009, 07:49:15 pm »
Congratulations on making your decision, DJ.  Not an easy thing to do; I know from experience  ;)

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

ginger21

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Re: Made my decision
« Reply #8 on: December 14, 2009, 10:29:09 pm »
Congrats on your decision!!! Keep posting on how it goes. I am still deciciding on what to do but am leaning toward radiaion, as I am just as big of coward as your are about surgery.

Ginger
W & W as of 01/27/2010 keeping my fingers crossed for the next 6 months
4mm AN-right side
www.facebook.com/gingerleigh72

KJ

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Re: Made my decision
« Reply #9 on: December 16, 2009, 04:16:01 am »
Hi DJ!  I'm so happy you've made your decision!  It is a relief just knowing that that part is over.  It's tough trying to take control of your own health decisions, isn't it?  We're so accustomed to doctors telling us what is wrong with us and writing a prescription for the rememdy, that being given the responsibility for treatment can be so overwhelming to the ordinary person!  When I found out I had a "Lumpy" I didn't know I would have choices.  Hope all goes well for you.  Now you can move over to the other forum.  Good luck!
Katte
58yr, married, no children.  Recently diagnosed with 10mm AN on left side.  70% hearing loss, tinnitus, some balance problems.  Previous mastoid eardrum replacements in both ears resulting in 60% loss on right side.  Currently considering treatment options.

leapyrtwins

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Re: Made my decision
« Reply #10 on: December 16, 2009, 06:54:54 am »
Now you can move over to the other forum. 

DJ -

not sure what "other forum" KJ is referring to, but we have plenty of forumites who have chosen radiation so please continue to join us here.  Your experience will be very valuable to all the newbies who come along; as well as those who are watching & waiting.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

davjack

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Re: Made my decision
« Reply #11 on: December 16, 2009, 02:09:15 pm »
I guess KJ means move over to post radiation posts. I will definitely keep everyone posted as to my progress. I am a big whiney baby and I'll keep you abreast of every gory detail. I'm kidding of course...except about the big whiney baby part.

Thanks everyone for being so encouraging. I'm so glad I found this website. And goodness knows neither of the doctors down here told me about it. I had to find it on my own. Now you know why I'm going 5 hours away to Gainesville.
DJ
Lumpy is 1.3cm...am now in W&W mode since Dec. 2009

leapyrtwins

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Re: Made my decision
« Reply #12 on: December 16, 2009, 02:37:43 pm »
DJ -

for some reason, the Forum seems to have been a well-kept secret in the past.  But, thankfully, things are changing!

It was talked about @ the ANA Symposium in August, and it's received recognition in a few issues of the ANA publication "Notes".

Please encourage your docs to "talk-it up" to their patients.  I've mentioned the Forum, the ANA, and the importance of both, to my doc numerous times - and he's done a great job of "getting" it. 

As we all know, there's nothing like connecting with others in the same "boat".

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

DR

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Re: Made my decision
« Reply #13 on: December 17, 2009, 03:16:33 pm »
Did I mention I've made my decision? I'm going for the radiation. I go to see Dr. Antonelli at Shands on Dec. 21. I'm way too big of a coward to get the surgery. Although the thought of having my head strapped to a table in a plastic Mexican wrestler's mask isn't thrillng me either, but hey I gotta butch up here.
Your "Mexican wrestler's mask" comment made me nearly spit Diet Coke onto my keyboard!

Congratulations on making a major decision.  Please let us know how things go and feel free to post a pic or two.  (BTW, can we now call you "Senor Lumpy" or "El Tumor Matador"???)

- Dennis
AN right side 12mm x 9mm x 9mm
Middle fossa surgery 11/4/09 at House (Dr. Brackmann/Dr. Schwartz)
Tumor removed, no facial issues, hearing intact!
http://denvstumor.blogspot.com/

"The greatest trick the devil ever pulled was convincing the world he did not exist."