Author Topic: Newly diagnosed - Need a Doctor  (Read 3153 times)

rebecca1

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Newly diagnosed - Need a Doctor
« on: February 25, 2008, 08:48:46 pm »
Hello all - This is an amazing website and I want to thank everyone for all the time and advice.  I have learned more on this website in one day than I have searching the internet on AN for 5 days.  My husband was just diagnosed (well just diagnosed being in Dec. 07 but just seeking treatment due to completing treatment for NHL (lymphoma).  How do I find a doctor?  The AN showed up on a CT scan for the lymphoma treatment.  He is 42, with no symptoms except ringing in left ear.  The ringing was why we sought medical treatment in the first place and the lymphoma was discovered!  We have seen an otolaryngology doctor locally (South Florida area) who even though the AN is still relatively small, thought treatment was necessary because it is so close to the brain. He referred us to a radiation oncologist who does gamma knife.  I am interested in cyberknife.  I called a cyberknife facility that is local, but they do not have doctors.  Doctors bring patients to their facility for treatment.  They did recommend a few neurosurgeons who are trained in cyberknife that use their facility, but none seem to be very experienced with AN.  Can anyone recommend a cyberknife surgeon with AN experience?  Where they are located does not matter.  To me, it seems like gamma or cyber, the most important thing is the experience of the doctor performing the surgery!  Opinions on this would be greatly appreciated as well.

Larry

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Re: Newly diagnosed - Need a Doctor
« Reply #1 on: February 25, 2008, 08:57:23 pm »
Rebecca,

Seems like you are well versed on the subject matter. I had middle fossa surgery and regret not having radiation treatment instead for a whole raft of reasons which are well documented on this site.

Anyway, you will get lots of suggestiions of appropriate docs. You hit the nail on the head - experience and age of equipment and software are vital. Also the technician's skill on the machine.

You need secialist neru advice especially if the growth is close to the brainstem. If its that close, they may not recommend radiation treatment so you need expert opinion.

Wait and watch is also an option (depending on where it is and what issues its causing) as he doesn't appear to have any hearing loss, watch and wait may be an option.

good luck


laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

Kate B

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Re: Newly diagnosed - Need a Doctor
« Reply #2 on: February 25, 2008, 09:19:56 pm »
Hi Rebecca,

Welcome to the site. One suggestion is to go the the physician topic and start one with a byline about Florida doctors.  You will get responses from many who have had treatment there.

All the  best,

Kate
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

rebecca1

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Re: Newly diagnosed - Need a Doctor
« Reply #3 on: February 25, 2008, 09:23:24 pm »
Larry - Thanks for the info.  What is secialist neru advice (sorry new to this).  I don't know how close is close.  The doc said it is not touching yet but wanted us to see the radiation onc soon just to make sure we don't lose radiation option.  

I would love watch and wait.  LOVE IT.  We have just completed 6 months of chemo for the NHL, and it was awful.  But he is in remission, and I don't want to wait myself out of treatment options.  I understand the growth is really slow which is nice.  Gives us time to find a good doctor!!!

good health to you!

rebecca1

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Re: Newly diagnosed - Need a Doctor
« Reply #4 on: February 25, 2008, 09:24:52 pm »
Thanks Kate. 

I will try it. 

Best to you too.

Rebecca

OTO

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Re: Newly diagnosed - Need a Doctor
« Reply #5 on: February 25, 2008, 09:39:10 pm »
rebecca1

Look on the ANA Home Page (www.anausa.org).  There is a tab called Medical Resources.  Look under Physicians List and Medical Center List.  They have some places listed for Florida.  Another asset is to click under the tab called Support Group.   See if ANA has a support group in your town.   A member might be willing to help you find an experienced doc.

The other way might be to log onto the forum.   Use the search tool.   Search under Florida.   It will list every post that has the word "Florida" in it...   that's a good place to start.   Best Wishes... OTO

Kate B

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Re: Newly diagnosed - Need a Doctor
« Reply #6 on: February 25, 2008, 09:48:53 pm »
Rebecca,

Here is a thread I found from this site about Florida doctors.  There may be info that is helpful.

http://anausa.org/forum/index.php?topic=1764.0

Kate
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

sgerrard

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Re: Newly diagnosed - Need a Doctor
« Reply #7 on: February 26, 2008, 02:58:00 am »
How about Jerome J. Spunberg, M.D., at the  Radiation Oncology Institute & Cyberknife Center of Palm Beach.
More info here, on the cyberknife patient support web site: http://www.cyberknifesupport.org/about_the_doctors.html
There are several other doctors listed there as well, and there is also a forum where you can post questions about CK.

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.

Larry

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Re: Newly diagnosed - Need a Doctor
« Reply #8 on: February 26, 2008, 04:03:04 pm »
Rebecca,

Sorry - typo's are common in my old age - specialist was what i was trying to say


Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

Omaschwannoma

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Re: Newly diagnosed - Need a Doctor
« Reply #9 on: February 27, 2008, 01:24:34 pm »
I had my surgery done at Shands in Gainesville with Drs. Antonelli (Neurotologist) and Lewis (Neurosurgeon) in 2005.  I highly recommend them IF you are choosing surgery.  Dr. Freidman is Cheif of Neurosurgery and heads up the radiosurgery program there.  I cannot comment on this sort of treatment, but it is definately worth going to talk with him for his opinion, to educate yourself and hubby on your AN journey and treatment plan.  I live in South Florida and if you want to PM me I am happy to answere any questions. 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

rebecca1

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Re: Newly diagnosed - Need a Doctor
« Reply #10 on: March 03, 2008, 09:49:06 am »
Thanks Arushi.  I believe that we are going with the radiation route, as my husband is not the ideal candidate for surgery right now due to just finishing chemo. 

Has anyone out there had Proton therapy for treatment?

Best health to you!

 


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