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Author Topic: CK in Florida  (Read 4005 times)

MaryjaneW

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CK in Florida
« on: April 01, 2012, 01:44:27 pm »
Looking for advice.  Have decided on CK but need recommendations for good doctors in Florida.  History:  I am post surgery, 1999 at John Hopkings, removing a 1.5 cm AN.  They removed a branch of my balance nerve.  I had lost some hearing prior to surgery but went to 95% loss after.  They told me a hearing aid wouldn't help me.  The tinnitus I've had since 13 years of age has not gone away.  It is a symphony of sounds that get louder when I am not well.  I had some facial paralysis but I just look angry on that side.  Rough for a generally happy person!  Some children are put off by my face but have been able to get jobs in the public eye in spite of this.  I was 47, went back to college, got a scholarship after one year, completed a Bachelors in VA and am now working for the state of Florida.  I followed my regimen of MRI's and, last year, they found that the AN had regrown to 1 cm.  This January, they told me it had doubled in size to 2 cm. My hearing in the right ear is now completely gone and I have 30% hearing loss in my other ear (not due to AN).  I have had a terrible time getting referrals from the GP, ENT and Neurologist.  They tell me they don't know enough to help me but a referral would be nice.  Finally, I have an appointment at Shans with no name attached to the referral, just ENT.  I'm on a costly merry-go-round, did my research and have decided not to go the surgical route again.  It took me a year and a half to feel normal again the first time.  At 60, I'm afraid it will take more out of me.

Any advice?  Any good doctors in Florida?  Is Shans as good as it is cracked up to be?  All help gratefully accepted.  Just want to deal with this and get on with my life as, I'm sure, everyone else feels on this website.  Thanks in advance!
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chloes mema

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Re: CK in Florida
« Reply #1 on: April 01, 2012, 03:59:41 pm »
Tampa - Dr. Bartels - neurotologist; his associate Dr. Danner
             Dr. Greenberg - oncologist - Director of Cyberknife Center

I've seen Bartels, he comes highly recommended by almost everyone in this area.

Just found Dr. Greenberg Friday, will have CK done by him soon.

If you'd like PM me for further info.

Karen
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Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

MaryjaneW

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Re: CK in Florida
« Reply #2 on: April 01, 2012, 05:02:41 pm »
Karen,

Thank you for your quick reply.  Do you know how many of CK's they have done?  I will check them out directly.  My surgery was done in Baltimore and that's a bit far for follow-up.  I can deal with Tampa.

Thanks, my friend!!!  Truly appreciate the information!
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Sheryl

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Re: CK in Florida
« Reply #3 on: April 01, 2012, 09:02:14 pm »
Shands in Gainesville was recommended to me but I am on year #10 of W&W so didn't follow through there.  Also used to be a great Cyberknife board where doctors would answer your questions but the two docs parted ways with Accuray (manufacturer).  One of the docs was very good - Dr. J. Spunberg and he did Cyberknife out of Palm Beach Gardens on the East Coast of Florida.  Also, in Orlando is Dr. Naren Ramakrishna, a radiation oncologist, who had practiced for many years in a large teaching hospital in Boston.  My husband consulted with him there and we were quite impressed.

Good luck - keep us posted.
Sheryl
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9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

Tumbleweed

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Re: CK in Florida
« Reply #4 on: April 01, 2012, 11:30:18 pm »
Quote from: MaryjaneW on April 01, 2012, 05:02:41 pm
Karen,

 Do you know how many of CK's they have done?

Hi, Karen:

I just want to say you are smart to ask this question. It is critical that you find someone who performs CK on a regular basis (hopefully weekly). The chances of success are much higher (around 98%) when performed by the best CK specialists, and the chances of avoidable problems way less.

Recovery from CK, as you know, will be much easier than from surgery.

I'm sure you know all this. I offer my comments in the spirit of support. Good luck!

Best wishes,
TW
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L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

chloes mema

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Re: CK in Florida
« Reply #5 on: April 02, 2012, 06:24:33 am »
I did ask that question and Dr. Greenberg smiled and said oh, about 50 a year.  That mad me feel better once my slow brain figured out that was almost one a week.   ;D

Karen

P.S. calling him today to set up my patient status and get started.  I'm so excited. 
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Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

MaryjaneW

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Re: CK in Florida
« Reply #6 on: April 02, 2012, 08:02:45 pm »
Thanks, my friends!  Appreciate the advice and support.  Will follow up on all.  Funny, I wasn't nervous last year or even in early February when they told me.  I guess, doing nothing, waiting on a referral, and wondering if it's growing too big for radiation soon has me a little psyched.  Glad to hear good things from all of you.  Thank you form the bottom of my heart!!!
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