Author Topic: I made my decision--and I'm sticking to it!  (Read 5029 times)

sharonov

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I made my decision--and I'm sticking to it!
« on: July 01, 2009, 01:20:27 pm »
After MUCH consideration, I'm flying out to L.A. and having the endoscopic procedure with Dr. Shahinian at the Skull Base Institute.  I talked to him on Monday afternoon, and he didn't try to "sell" the procedure any more than anyone else has tried to sell theirs, except that he's obviously and passionately in favor of his approach.  The fact that it's so much less less invasive and that if I have the procedure on Wednesday I can fly home Saturday (even though I have friends and will stick around L.A. a little longer) and my recovery time willl be so much less--I do think that endoscopy is the wave of the future.  And that's from my reading, not from Dr. Shahinian.  The big downside is that they don't take Medicare, therefore my secondary insurace won't pay, and I will be out a chunk of change.  But as my son said, "if you ended up with even one of the side effects you've told me about, you'd be willing to pay more than that to get these things back and it would be too late."  One of the biggest selling features too was that his othr specialty is Trigeminal Neuralgia, and the TN is the only reason I'm doing surgery at all!  He took the time to read my MRI carefully before phoning me, and took a long time to explain that, even though 1.4x1.3x1.4 seems small, it's in the "class 2" range, and since my hearing in the affected ear is so deficient in the higher ranges he will have less chance of saving the hearing.  I was sad, but the other docs never said that.  At least I'm not going in like Pollyanna, thinking I'm going to leap off the table and resume my life exactly as it is now.

So--my date is over two months away, Oct. 14.  That way I can go to my niece's wedding in Denver, meet lots of you at the symposium down the street from my dwelling, hike in the Cotswolds, and visit some friends in their Wisconsin cottage.  I'm looking forward to a busy summer!  Then fly to L.A., have a hold bored into my head,  and we shall see what happens after than.
Sharon   :D


another NY postie

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Re: I made my decision--and I'm sticking to it!
« Reply #1 on: July 01, 2009, 01:38:11 pm »
Sharon,
Wow!  Congrats on your decision!  I have been waiting to see what you'd post after consulting with Shahinian... I am sure it is a great relief just making the decision.

Curious, did he confirm that he did 8 AN surgeries per week like his assistant said?

I think before all is said and done, I will have to consult with him too.

I am very happy for you and wish you the best of luck with it!
Cheryl
5 mm lateral IAC (impacted?) diagnosed 6-09-09
middle fosa 9/23 HEI - Brackmann/Schwartz
all tumor gone, facial perfect, no ringing
SSD on right side - Rockin' and Rollin'

Jim Scott

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Re: I made my decision--and I'm sticking to it!
« Reply #2 on: July 01, 2009, 02:21:43 pm »
Sharon ~

Congratulations!  You've made a bold but necessary decision and your realistic attitude is refreshing.  I suspect that endoscopic AN removal surgery may be the 'wave of the future', too.  We'll see.

It's a shame Medicare won't cover this and you'll have to spend a lot of money but as your astute son stated, it's worth it.   I wish you much success.  I've also added your endoscopic surgey to our AN Treatment Calendar.  http://my.calendars.net/an_treatments/d14/10/2009?authenticate=&display=M&style=B

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.

sharonov

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Re: I made my decision--and I'm sticking to it!
« Reply #3 on: July 01, 2009, 02:32:16 pm »
Cheryl, I didn't even ask about the numbers!  I'll be speaking with him again, so next time I will.

I'm curious--with such a small tumor, why aren't you doing CK?  That's what I'd be having if I didn't have the complication with trigeminal neuralgia.


another NY postie

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Re: I made my decision--and I'm sticking to it!
« Reply #4 on: July 01, 2009, 02:56:41 pm »
You know, Sharon, the most difficult thing about having such a small AN is that I have ALL options....it has been quite overwhelming to say the least.  I am basically not comfortable with radiation.  I know the stats and I have seen doctors that do both, but no one is recommending it to me (I am 46).  Regardless of that, I have read many, many posts on this site from young people who did it and are very happy with their choice.  I have been on the cyberknife site too.  I just know it is not right for me.  My husband is a NYC firefighter and we have seen SO much recently with health issues post 911 - long term effects on health that are really bad.  Not that they had radiation but I see things that pop up years later so it would make me paranoid.  And I don't want to worry that it is not out and will grow. I think every single decision in this process is a gamble.  None of us is immune to the risks and whatever we do, the truth is it is some kind of gamble or another.  I am actually glad that radiation doesn't appeal to me because it is giving me one less option to muddy the waters with!

I think I just want this thing out...it is just more when and how?

I am looking forward to the day that I can post like you that I finally have made a decision.

Cheryl
5 mm lateral IAC (impacted?) diagnosed 6-09-09
middle fosa 9/23 HEI - Brackmann/Schwartz
all tumor gone, facial perfect, no ringing
SSD on right side - Rockin' and Rollin'

Jeepers

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Re: I made my decision--and I'm sticking to it!
« Reply #5 on: July 01, 2009, 06:51:55 pm »
Congratulations, Sharon! It's a great feeling to finally make and be comfortable with your decision. Good for you!  :)

We'll all be anxious to hear how your experience goes!


I'm curious if when talking to the other docs, you asked them what their opinion of endoscopy was? Whether it be radiation, surg, wait, or endoscopy ... sometimes it's interesting to hear the cross-opinions. I recall from consults 6 yrs back (when I was diagnosed) as well as current, a variety or responses ... some biased, some not. Did you ask?

Anywho, good going! I KNOW a weight is off your shoulders right now!  :)
Diagnosed 2003-right side-1cm AN
Wait and watch for 6 yrs; 2009 showed growth w/balance issues
Translab 7/9/09 - Drs. Battista/Kazan (Hinsdale IL); SSD
Recovering well!

sharonov

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Re: I made my decision--and I'm sticking to it!
« Reply #6 on: July 01, 2009, 08:34:29 pm »
Cheryl, I understand perfectly why you'd be hesitant to have radiation.  If I had had the same experiences as your husband I would have felt the same way.

I didn't ask any of the other doctors what they thought about endoscopy.  It didn't even occur to me.  However, I will do so at the symposium.

Naturally I'll post all about it afterwards; and if I don't make it, I'll have my husband post!  :o

sgerrard

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Re: I made my decision--and I'm sticking to it!
« Reply #7 on: July 01, 2009, 08:42:21 pm »
At least I'm not going in like Pollyanna, thinking I'm going to leap off the table and resume my life exactly as it is now.

Although very little is guaranteed when it comes to ANs, life not returning to exactly as it was before is a safe bet.

Wedding, Symposium, the Cotswolds, Wisconsin, and brain surgery. This sounds like a fine plan.  :)

Although he is sometimes disparaged as a plastic surgeon for it, Shahinian honed his skills doing facial reconstruction surgery and removal of all kinds of lumpy tumors. He has published extensively on things like transnasal transsphenoidal hypophysectomy (a pituitary surgery), and other things I can't pronounce. I expect you to do well.

Congratulations on setting the date. Now enjoy your summer!

Steve

PS: Nice picture, Cheryl.
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

leapyrtwins

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Re: I made my decision--and I'm sticking to it!
« Reply #8 on: July 02, 2009, 11:16:39 am »
Congratulations on making your decision, Sharon.

Hope all goes well  ;D

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