Author Topic: What do do?  (Read 9794 times)

mnastasi

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What do do?
« on: November 29, 2009, 08:55:50 pm »
I was diagnosed with AN 2.8 cm x 2.7 cm x 2.0 cm about 6 weeks ago.  I saw a neurosurgeon who teams with a neurootologist (i saw him too) very early after diagnosis.  I went in unprepared and just listened.  I have since done LOTS of research...I am also lucky to have a brother who is a radiation oncologist (but does not do gamma knife) and a sister who is a neurologist who have helped me tremendously in gathering information.  After deciding that traditional surgery was the right way to go, and making the appt, we had a friend (who is a neuroanesthesia MD) call us asking if we wanted to talk to a radiation oncologist at Wake Forest Baptist Medical Center (we live 5 minutes from there).  My husband talked with the neurosurgeon (who treats with the Radiation Oncologist) who said he would ABSOLUTELY do GK...oh my...I really want this thing OUT of my head...I am not sure I even want to go hear what the radiation guys have to say...i am on an emotional rollercoaster!!  Should I just go with the surgery that I already have scheduled???  or should i go hear what the other guys have to say?  ( I do feel like they will try to "sell" me on their treatment!!)  Thanks for any input..

ps. I am a very active 41 year old mom of 3
« Last Edit: November 30, 2009, 02:36:03 pm by Jim Scott »

leapyrtwins

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Re: What do do?
« Reply #1 on: November 29, 2009, 09:00:16 pm »
First and foremost, you need to decide what treatment is right for YOU.   Although everyone is just trying to help, this isn't your brother's or your sister's or anyone else's brain tumor - it is yours.

AN treatment decisions, are very personal decisions.  What is right for one patient isn't right for another.  I chose surgery over radiation for numerous reasons, but mainly I wanted the tumor out of my head.  I didn't want to do radiation and then wait to see if it would die or not.  But - and I strongly stress this - that was just me.  I am 100% sure that surgery was my best choice, but most who had radiation will tell you that they are 100% sure it was their best option.

Don't let others sway you.  Do what you are comfortable with.

Good luck,

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

mnastasi

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Re: What do do?
« Reply #2 on: November 29, 2009, 09:20:41 pm »
Thanks for your quick response!!  I am just ready to make a decision..and stick with it!!  I am really scared and keep thinking "what is something bad happens to me?"  I guess this is normal??


moe

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Re: What do do?
« Reply #3 on: November 29, 2009, 09:29:05 pm »
Quote
I am really scared and keep thinking "what is something bad happens to me?"  I guess this is normal?

YES this is completely normal! The decision part is the hardest.
 Mine was bigger and pressed against the brain stem, so there was no alternative except for surgery.
Your size is getting  to the cut off point of GK and CK.
Honestly no matter which route you choose, there are going to be side effects to deal with. Nothing BAD will happen, just the normal things that DO happen which are easily treatable and livable post surgery.
Here's praying you make the right decision that is best for YOU!
Maureen
P.S. Welcome ;)
« Last Edit: November 30, 2009, 02:37:18 pm by Jim Scott »
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

moe

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Re: What do do?
« Reply #4 on: November 29, 2009, 09:29:45 pm »
Glad to know that you are not four years old! :D
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

leapyrtwins

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Re: What do do?
« Reply #5 on: November 29, 2009, 09:41:37 pm »
It's very normal to wonder if something will happen to you.  If you didn't wonder, you wouldn't be human  :)

Just hearing all the possible side effects of treatment - both surgery and radiation - are enough to give a person pause.  You just need to weigh the pros and cons of each treatment and see what you are comfortable with.  You also have to have complete and utter faith in the doctor (or doctors) who will be performing your procedure. 

I was lucky enough to find that confidence and faith in the first neurtologist I consulted with, so I looked no further.  My biggest challenge at that point was deciding between GK and surgery, since he does both.  I initially told him there was "no way" I could have surgery, but a few days later that's exactly what I decided to do and I just somehow knew it was right for me.  When I met my neurosurgeon, it was just the icing on the cake.  My level of comfort and confidence in my treatment option and my choice of doctors skyrocketed - and the rest is history.

Sometimes you just know when it's right; as we like to say here, there's a lot to be said for "going with your gut".

You'll get there; decide what is best for you and don't second guess yourself.

Best,

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

Kaybo

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Re: What do do?
« Reply #6 on: November 29, 2009, 09:44:35 pm »
Hi!  & WELCOME!
I caught the 4 year old reference too - glad you are "more mature"!!  LOL!!  I would love to be a sounding board for you if you would like to talk to a real person who has "been there" - looks like we are around the same age and I also have 3 kids... would be more than happy to give you a call if you want to PM me your number!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

sgerrard

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Re: What do do?
« Reply #7 on: November 29, 2009, 11:01:38 pm »
Nothing BAD will happen, just the normal things that DO happen which are easily treatable and livable post surgery.

I like the way Maureen put it. An acoustic neuroma and its treatment can whip up a batch of "no fun" in no time, but you will definitely still be there to complain about it.

If you don't want to do GK, then a measurement of 2.8 cm is big enough to say "too big for GK," and be done with that question. It is about as big as they usually do comfortably, unless there are compelling medical reasons to do a larger one. I did Cyberknife, and I'm glad I did, but mine was less than 1 cm.

I would take Kay up on her offer of a phone call. I have met her, and I'm sure you two 4 year olds would get along great. :)

Steve
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.

nteeman

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Re: What do do?
« Reply #8 on: November 30, 2009, 07:56:02 am »
FWIW, I had a similar size AN and most of the MD consultations said to do the surgery not radiation. And, in fact, I like you, did want this 'thing' out of my head. That said if you keep looking you will find someone who will offer radiation over surgery. I found someone too who would go with radiation although everyone else said surgery. At that point I had already made up my mind for surgery. Once again, as others have said, you have to choose the treatment that YOU want. If you see enough specialists there will always be at least one who differs from the others, but you need to take in what they all say then decide what you think is right for you.

Good luck,
Neal
Diagnosed 12/16/2008
AN 2.4 X 2.0 X 1.6 CM
surgery performed on 1/27/2009 Mt. Sinai Hospital, NYC
Dr.Bederson & Dr. Smouha
9:30am thru 5:50pm
http://www.facebook.com/neal.teeman

mnastasi

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Re: What do do?
« Reply #9 on: November 30, 2009, 10:20:40 am »
Thanks to all of you...the support literally has brought tears to my eyes! (not too unusual these days).  OK...I am going to call right now and cancel my radiation oncology appt...it does not feel right to me..I really do feel like my tumor is too big..and you all have helped so much to confirm that for me.   :) thanks!

Mickey

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Re: What do do?
« Reply #10 on: November 30, 2009, 10:42:44 am »
Hi Mnastasi! As a active Wait+Watcher I have had the great opportunity to meet so many AN patients who have done surgery or radiation. I have seen so many positive results. I`m glad to see you have made your decision and know soon enough you`ll be on your way to a speedy recovery. Just a note that nteeman who has posted to you hear is one of the special people who I`ve seen before and after within the past year who is doing great. Best wishes, Mickey

Kaybo

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Re: What do do?
« Reply #11 on: November 30, 2009, 11:15:07 am »
Steve~
Your typing is usually SOOO much better than that - I can't believe that you forgot the number after 4... ::)  Of course, since I am not even 40 YET...

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

CHD63

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Re: What do do?
« Reply #12 on: November 30, 2009, 02:07:24 pm »
Mnastasi .....

Very late jumping on the band wagon here, but want to add my welcome to ANland.  You have already received excellent advice from others.  I would have to agree with those who said this is a very personal decision.  Everyone means well ..... and it looks like you have many medical experts close at hand ..... but it is your skull and your decision.

Keep us up to date on how you are doing ..... you now have a concerned AN family!   :D

Thoughts and prayers.

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

mnastasi

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Re: What do do?
« Reply #13 on: November 30, 2009, 02:28:02 pm »
Thanks Kay for our chat.. :) I just cancelled my appointments and will be moving forward from now on..not looking back.  Thanks again for all of your support!

Kaybo

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Re: What do do?
« Reply #14 on: November 30, 2009, 03:39:23 pm »
Really enjoyed talking to you - hope you got the cable problems solved!!  Please call me anytime!!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!