Author Topic: Dragging my feet?  (Read 6548 times)

MDemisay

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Dragging my feet?
« on: March 29, 2012, 01:21:48 pm »
Hello All,

I have new information about my journey. As many of you know a regrowth is shocking news....Something that we all deal with differently for sure! Something like the Elizabeth Kubler-Ross steps of death.....or similar to that....denial,anger,bargaining, resentment, and eventually acceptance. Did I skip a couple it is hard to remember!

I am not dragging my feet here , am I? It's just dealing with this and making a choice between doing nothing (definetly NOT doing that) and Gamma Knife and Cyber Knife has been extremely difficult. My bent is toward Gamma Knife because I don't want to be repeatedly sick as I would be with the cyber knife solution.

Anyway, it's been a long time deciding on how to proceed, certainly my neurosurgeon Dr.Sisti thinks I could procede based on this slow growing tumor that I should definitely do it in the calendar year of 2012. However, with what I learned yesterday in Dr. Golfinos office was that why wait that long? He would do the Gamma Knife soon.

I have resolved in my self to get another opinion that of Dr. Kondzuilka and Dr. Flickinger. I am going to see them both at once since it's Pittsburg and I live in NYC. My wife thinks that we could wait until June to have me radiated with Gamma Knife. She would prefer me to have it with Dr. Sisti because she fears any complications that I might have and Dr.Sisti has said he wouldn't follow me if I had the procedure done elsewhere.
But Dr.Sisti gave a glowing recommendation to Dr. Kondzuilka and that helped me decide to follow up with him.

It's just hard to schedule all of this into the time that we have right now, because my daughter will graduate from college in May and my wife thinks that it would be hard for me to be in a wheelchair because the wheelchair accommodations have already been made. She feels that after my last surgery, I took a long time to recover and she doesn't trust that this will be different.

I feel like a burden on my wife already! We are attending the graduation in the Dunkin Donuts Arena in Providence,Rhode Island. I have been deciding since January, she thinks this (the radiation)should have been done already, she says that I have had 3 months and she has to move on with my daughter and her graduation plans.

If I trust my gut, I go with Dr. Kondzuilka.

What would you do?

Mike





1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

Jim Scott

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Re: Dragging my feet?
« Reply #1 on: March 29, 2012, 01:23:55 pm »
Mike ~

I would trust my gut.

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.

rays

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Re: Dragging my feet?
« Reply #2 on: March 29, 2012, 02:32:55 pm »
Mike,

This may sound a little simplistic, but last week when I was at HEI trying to decide if I should or shouldn't have surgery I did something that my dad always did. I took a piece of paper and put a vertical line down the middle. I then wrote the "pros" for surgery on one side and the "cons" on the other.

Doing this took a lot of the emotional stuff out of it and left me with the facts.

Once I saw it written out like that it became very clear that surgery was the way to go for me.

If that doesn't work... go with your gut.

Ray
2/17/12- Urgent Care dizzy/ringing in ear.Told sinus infection.It wasn't
2/23- ENT Doc Inconclusive.Sent to hearing test
3/8- Hearing test
3/12- ENT concerned w/test results.Sent for MRI
3/12- MRI
3/19- ENT sees AN.Sent to HEI
3/21- Dr. House recommends middle fossa
4/26- Scheduled for Surgery

MDemisay

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Re: Dragging my feet?
« Reply #3 on: April 02, 2012, 12:30:10 pm »
Jim and Ray,

It doesn't sound simplistic at all! I plan to do it that way! In terms of confidence Dr. Sisti wins so far but that could change, in terms of distance and follow up Dr. Sisti is closer so he wins again and he wouldn't follow me if I were to be treated in Pittsburgh. I have to see......In terms of expertise Dr. Kondzuilka wins, because he taught Dr. Sisti and he purportedly did more CT scan imaging. At this point I'm on eggshells. I know I've said if I go with my gut.....but! Perhaps the deciding factor will be how many gy I get, so far Dr. Sisti has said he wants the lowest dose possible which he has said is 12gy........

It's driving me nuts! Soon, I'll be a basket case.....Too late, I've already named my AN!

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

leapyrtwins

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Re: Dragging my feet?
« Reply #4 on: April 02, 2012, 12:36:27 pm »
I rank trust your gut as #1, but think that the pro/con list is also a good idea.

It's what I did when making my decision.  My gut was the deciding factor, but my pro/con list reinforced it.

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

MDemisay

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Re: Dragging my feet?
« Reply #5 on: April 02, 2012, 03:14:48 pm »
Jan,

Thanks for your advice and prayers as well, you have been very supportive throughout this AN adventure, in fact all of you have, now I have to go home and do some packing, packing and some affirmations and try and get some sleep!

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

Ned

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Re: Dragging my feet?
« Reply #6 on: April 09, 2012, 12:33:59 pm »
Mike, did you consider FSR?  If so, what did you determine were the disadvantages compared with CK or GK, other than having to commit to the 26 day regiment.

Good luck,
Ned
2003   1.5cmX1,6cmx1.3cm
FSR Sara Cannon Cancer Center  Nashville
2006  1.1 cmX1.2cmX .9cm

MDemisay

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Re: Dragging my feet?
« Reply #7 on: April 10, 2012, 02:13:23 pm »
Ned,

No, I have not considered FSR treatment as it is lengthy and I would rather get it over in one shot! I am just a big baby, I suppose! I have committed to Gamma Knife either in NY Presbytarian with Dr. Sisti (because I live only an hour and a half away by car) or in Pittsburgh with Dr. Kondziolka which is an hour and a half away by jet.

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!