Author Topic: 9mm AN  (Read 2644 times)

btown

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9mm AN
« on: December 19, 2007, 09:40:45 am »
I have been diagnosed with a right side 9mm AN and I am considering CK. I have already met with 2 surgeons regarding that avenue and just met this week with Dr. Michael Hardacre in Indianapolis about CK. He made CK sound awfully good.

I have had hearing loss in my AN ear and seem to have a little facial numbness/weirdness on the AN side, too. Just today, I think I'm starting to experience dizziness/balance issues, also. To complicate matters, I had Bell's Palsy when I was age 14 (I'm age 35 now) and have that concern regarding either treatment option. Also, I have concerns with the CK since I'm age 35, what effects the radiation will have on me in 20-30 years.

Any suggestions?
9mm AN diagnosed November, 2007
CK in January, 2008
1 year MRI shows no growth, 5mm shrinkage

Sam Rush

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Re: 9mm AN
« Reply #1 on: December 19, 2007, 10:20:32 am »
Good point about the radiation. 9 mm is considered small and would be a good ck target, but nobody really knows the long term effects of radiating a benign tumor like AN, although statistics show better and better results.

You may want to talk to an experienced AN surgeon re; surgical options for a 2nd opinion.

Good luck

Sam
1 cm AN translab, Dr. Brackmann, Dr. Schwartz, Dr Doherety HEI   11/04   Baha 7/05

OTO

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Re: 9mm AN
« Reply #2 on: December 19, 2007, 11:39:50 am »
btown

Take a look on the ANA Home Page, should have some links to other pages.  There is a very good CyberKnife Support Group forum.  There are several doctor's that answer questions on the forum.  The fact that symptons are starting to appear are bothersome, but ANs are very slow growing and 9mm is small.   So take the time to do all the consultations you need to alleviate your concerns. 

Every AN is different due to size and location.   Every individual has a different tolerance to the treatment, side effects or any complications.   Experience of the medical team has an impact on the outcome too...  good luck...

ppearl214

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Re: 9mm AN
« Reply #3 on: December 19, 2007, 03:27:55 pm »
Hi btown and welcome... looking at your screennic and thinking Beantown as in Boston? :)

great suggestions thus far. Many options, time to figure them all out and what works best for you.  Since your's is considered small in size, there is time to weight out all options.  Please take your time to read the "Microsurgical" forum, the "radiation/Radiosurgery" forum as well as the "watch/wait" forum.  There are many of us that will email and speak on the phone about our treatments and how things have gone post-treatment.  We are here to help.

It's difficult to say "good to see you here" meaning.... it's good you found a haven filled with folks that truly do understand... yet....well, you know what I'm trying to say.... we hate to see you here, but we are glad to see you here.

Again, welcome.  Should you need help navigating the site, we are more than happy to help.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

fbarbera

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Re: 9mm AN
« Reply #4 on: December 19, 2007, 05:44:04 pm »
I would suggest emailing your MRI scans/report to Dr. Chang at Stanford (CK) -- they have been treating ANs with CK since 1999 or so with very good results.  House Ear Clinic (Surgery) will also give a free consultation -- they are generally pro-surgery and have treated more ANs than I think anywhere else, bar none.  The best treatment of ANs is a subject of debate among neurosurgeons, so at the end of the day, it will be up to you to decide whether surgery or radiaotherapy is the way to go.  Be prepared to receive conflicting advice and to witness first hand that doctors have personal biases.  The good news is your is small enough that all options are available to you.  I'm 35 and had CK done on a much larger tumor (2.5 cm) in August.  I was pretty comfortable that tumor control rates were essentially equivalent (in the mid to high 90s) among the treatment options (CK, GK, surgery).  For me, the two principle factors that tipped the scale were hearing preservation (I still have very good hearing in my tumor-side ear -- go figure) and avoiding the risks of facial nerve damage.  I also had a general aversion to the concept of surgery but that is just personal to me.  I am glad to talk more if you want -- just email me directly.

Best,

Francesco

er

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Re: 9mm AN
« Reply #5 on: December 19, 2007, 06:38:00 pm »
hello btown,

You are in a wonderful place to be in,  this group of people are awesome. What ever you decided on treatment good luck.

eve