Author Topic: Right in the middle  (Read 3942 times)

latirus

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Right in the middle
« on: March 02, 2011, 05:32:51 pm »
I've been informed that I am a bit on the young side for radiation (66) and I feel a bit on the old side for surgery.  No help there.  Perhaps after I actually see the surgeon and oncologist I will find out more, discover I have risk factors either way, but meanwhile it seems a difficult choice. 

CHD63

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Re: Right in the middle
« Reply #1 on: March 02, 2011, 05:42:51 pm »
Welcome latirus  .....

Tell us a little bit more about your AN (size, specific location if you know it) and your symptoms.  I'm a little puzzled by 66 being on the young side for radiation and the old side for surgery.  Did a doctor tell you that?  Any reasons given?

In the meantime, send for the free ANA materials, if you have not already done so.  They contain a wealth of very practical information.  See:  http://www.anausa.org/index.php?option=com_aicontactsafe&view=message&layout=message&pf=4&Itemid=195

Gather your questions and ask away.  That (and for support) is why this forum exists.

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

sunfish

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Re: Right in the middle
« Reply #2 on: March 02, 2011, 05:53:10 pm »
Welcome, although I'm sorry you had to join our little club!  Read, read, read everything about this condition.  But do take it easy - ANs grow slowly, and there's usually no hurry in making a treatment decision.  I had radiation (CK) and I'm 51.  The whole treatment decision thing can be awfully overwhelming.  Let us know what else you find out! 
Rt. side 14mm x 11mm near brain stem
Severe higher frequency hearing loss
I use a hearing aid (Dot 20 by Resound)
Balance issues improving!!!!
Cyberknife March17, 2010
Roper Hospital Cancer Center, Charleston, SC

rupert

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Re: Right in the middle
« Reply #3 on: March 02, 2011, 09:35:12 pm »

   I had my Gamma Knife at 49.      I am going to make an assumption here that this was information from an ENT.   I think when you get opinions from
the neurosurgeon's  things will be more clear on options.   I do know though,  that you can get many varied opinions on options even amongst respected
doctors who deal with a lot of AN's.   Keep doing your homework ( These forums are great )  and get enough opinions on options so you can make a decision
you are comfortable with.  There are very good resources out there and unless your having some severe symptoms you probably have some time to take it all in.
It can get overwhelming,   so take it at your own pace and good luck to you.   Bryan

mk

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Re: Right in the middle
« Reply #4 on: March 03, 2011, 09:40:42 am »
Being 66 is not too young for radiation, this is old school thinking. The most important thing is to get informed, and ask for many opinions. Go for your consults armed with questions.

Good luck to you.
Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Jim Scott

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Re: Right in the middle
« Reply #5 on: March 03, 2011, 02:14:07 pm »
latirus ~

Hello - and welcome, although I'm sorry you have an acoustic neuroma diagnosis to deal with.  You didn't offer any specifics on your AN but for what it's worth, I'll submit that at the time of my AN diagnosis in 2006, I was 63 years old (and in good health).  My doctor (a superb neurosurgeon) suggested 'debulking' surgery followed by radiation (FSR).  Long story short: I agreed to the doctor's plan.  I had no post-op complications and my pre-surgery symptoms disappeared immediately following the surgery.  The radiation sessions were tedious but otherwise uneventful.  Later MRI scans showed tumor necrosis (cell death).  Almost 5 years later, I'm doing great!  By the way, when discussing both the surgery and the planned follow-up radiation, my doctor never mentioned my age, so, unless you have other heath issues along with the AN, I see no real reason not to consider either surgery or radiation.  However, that decision remains yours, alone. As AN patients, we don't attempt to decide anyone's course of action for them - but we will support whatever choice you make.  If you have any questions we might be able to answer (we're not doctors, of course), please feel free to ask or just vent, if necessary.  We know what you're going through and our members are always eager to help another AN patient in whatever way they can.   

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.

leapyrtwins

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Re: Right in the middle
« Reply #6 on: March 04, 2011, 08:32:21 pm »
Take heart, latirus, making your treatment decision is probably THE hardest part of the AN Journey.

Once you get past that, it's generally all pretty much downhill. 

You need to decide what is right for YOU - no one can make the decision for you.  Follow your heart and follow your gut.

Find a doctor - or doctors - you have confidence in and trust completely.

If you haven't already, contact the ANA for their informational brochures - they are very well written and may help you in your treatment decision.

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

C Bourne

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Re: Right in the middle
« Reply #7 on: March 06, 2011, 07:47:33 am »
Latirus,

I had radiation last year at 32. I researched both radiation and surgery thoroughly (this board is a god-send!), and consulted with both sets of docs.  Many factors played into my decision on radiation vs. surgery but I feel it was the right option for me.  I'm not sure why 66 would be too 'young' for radiation...?  Guess it all depends on your point of view!

-Cyndi-

Jun '09 - Left AN diagnosed 14mm
May '10 - FSR via Novalis (25 sessions) Foothills Hospital, Calgary. Deemed successful!
Aug '13 - facial pain - diagnosed w/ Trigeminal Neuralgia caused by AN crushing Tri nerve
Oct 26/15 - Retrosigmoid surgery - partial AN removal. Facial impact hoping short-term.