Author Topic: Im back from the Neuro...  (Read 4115 times)

fbarbera

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Re: Im back from the Neuro...
« Reply #15 on: February 05, 2008, 07:56:13 pm »
Hello Tatianna,

In case you do wish to obtain additional consultations, there are a few options for obtaining consultations free of charge.   

The House Ear Clinic, which is the one of the preemiment treatment centers for Acoustic Neuroma's in the US, offers a free consultation for Acoustic Neuromas.  They treat hundreds of ANs every year.  I obtained a consult there and the physician (Dr. Slattery) was excellent.

http://www.houseearclinic.com/acousticneuroma.htm

Also, you can post a message about your tumor and the approach recommended by your doctors on the Cyberknife Message Board.   There are two or three experienced neurosurgeons who respond to patient questions and offer general advice.  In some cases, I know they have offered to review MRI scans.  You can run your situation by them and see what they say about the watch and wait approach.

http://www.cyberknifesupport.org/forum/

When I was diagnosed, I emailed a couple of experienced doctors and attached my MRI report.  Some were willing to talk on the telephone without a formal consultation.  So you might try just looking up some Acoustic Neuroma experts in Canada or elsewhere and emailing them directly.

Best,

Francesco








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sgerrard

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Re: Im back from the Neuro...
« Reply #16 on: February 05, 2008, 10:48:05 pm »
..however he did mention that my AN has had considerable growth and they both realize that and his gut instinct is I will need to be treated after my next MRI..the treatment they are suggesting for me is GK as long as my hearing is still functionable, if not he says that surgery would be the better option if ive lost my hearing.
Again he reminded me that I could loose my hearing at any momment, treatment or no treatment.

Tatianna, are you sure you didn't see my ENT here in Portland? He said very nearly the same things - it is small, but growing, and I'd probably need treatment soon; do radiation if you still have hearing, surgery if you lose the hearing; the hearing could go any time. He had a patient who waited and lost hearing, so he tended to favor treatment over waiting, which is what I did.

I wonder if you could get the GK consult underway, so the oncologist can do the screening and pre-treatment assessment, and then wait for the MRI? That way you would be ready to go if it turns out it is growing, or if it suddenly started impacting your hearing more. I don't know how the Canadian system works, but if it takes 3 months to get a consultation, it might be worth it to put that in motion now.

Anyway, it sounds like you have gotten a good read from your doctor on the situation, and are not in any immediate danger. Try to relax and not spend all your time thinking about, gradually you will get used to having your little friend around. From time to time you can gather more information, so you are ready when the time comes.

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.

tatianne

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Re: Im back from the Neuro...
« Reply #17 on: February 06, 2008, 06:44:00 am »
thanks everyone for your responses. much appreciated.

I am going to try to get the GK consult set up earlier then next years mri, i have to have a hearing test in May and return to my neurotologist at that point so im going to ask him to prepare my file at that point and give me the referal...hopefully he will agree with me...

Thank you all for always being here and providing such wonderful support and encouragement, it helps me sooo much all the time.
 God Bless
T

Waith and Watcher
July 2006 8mm
Jan 2007 9.5 mm
Jan 2009 1.4 cmm x 5mm
GK surgery completed on May 4, 2009 in Sherbrook Quebec, hoping and praying this will be the beginning of the end of my AN......

candtlaw

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Re: Im back from the Neuro...
« Reply #18 on: February 07, 2008, 07:39:40 am »
thinking of you today. Hang in there........ lots of good advice above. The best I think is to follow your gut and see as many drs as it takes for you to trust and feel completly comfortable with one...... hugs........
Cyndi
post CK for AN 1cm 04/30/07


Loving my life today :)