ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: JohnB on April 16, 2011, 10:50:44 am
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I was recently diagnosed with a 1 cm AN. I have had tinnitus for some years now and had a dizzy spell and thought it might be a heart attack or stroke. Turned it it was neither but an MRI revealed the AN. I have been referred to a neurosurgeon here in Orlando at Florida Hospital. Does anyone have any experience with this facility. Any suggestions for the Central Florida/ Orlando area.
Thanks,
JohnB
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Hi, John - and welcome~
I'm sorry you've been diagnosed with an acoustic neuroma but glad you discovered the ANA website & discussion forums. Because I don't live in your state, I can't help you with information about central Florida doctors/hospitals but we have quite a few members who live in Florida and will very likely offer you the information you're seeking. Meanwhile, I would suggest that you read the data on ANs listed on the home page of this website (http://www.anausa.org/ (http://www.anausa.org/) which is very informative. I will comment that with a tumor so small, you do have options, including observation (aka 'watch-and-wait') and irradiation as well as surgery. Something to consider as you begin this journey no one really wants to take. Of course, we'll be with you all the way with advice, information and, most of all, our support, based on our experience as AN patients. We know what you're dealing with - and we want to help.
Jim
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Thanks for the support Jim. I will continue to read all the information on the ANA site. One issue for me has been trying to explain this to friends and family. You can see they are stunned and frightened when told of the diagnosis just as I was. I have not yet talked to the neurosurgeon yet. I have an appointment on Tuesday April 19. The ANA site has provided me with much needed information while waiting for for this first appointment.
Thanks again,
JohnB
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JohnB
As Jim stated, your AN is on the small side still. Please take time to review all options. I know at first most say "I just want it out". But after researching the options that may not be best for you. Take your time!
TJ
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Shands...
Hi John; I trust you are seeing a qualified Otologist? A Neurosurgeon alone wouldn't be sufficient in diagnosing and treatment planning. You may be recommended by such for an unnecessary surgery.
I was recently diagnosed with a 1 cm AN. I have had tinnitus for some years now and had a dizzy spell and thought it might be a heart attack or stroke. Turned it it was neither but an MRI revealed the AN. I have been referred to a neurosurgeon here in Orlando at Florida Hospital. Does anyone have any experience with this facility. Any suggestions for the Central Florida/ Orlando area.
Thanks,
JohnB
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I trust you are seeing a qualified Otologist? A Neurosurgeon alone wouldn't be sufficient in diagnosing and treatment planning. You may be recommended by such for an unnecessary surgery.
I'm not at all convinced that statement is correct. As I'm sure you know, an otologist is not the only doctor who can diagnose and/or perform AN surgery. Although many AN patients are diagnosed by an ENT and they are usually part of the surgical team, my AN was diagnosed by a radiologist and it was confirmed by a neurosurgeon. I consulted with a neurosurgeon who planned and performed my AN debulking surgery (with his partner - another neurosurgeon). An otologist (ENT) was never involved. My subsequent, previously planned FSR was also plotted by my neurosurgeon who teamed with a radiation oncologist. This is not unusual. I have nothing against the specific medical discipline of otology but I would caution against assuming that an acoustic neuroma diagnoses and surgery is somehow deficient if an otologist is not involved or, worse yet, that a neurosurgeon might recommend 'unnecessary' surgery based on an inept diagnoses or, worse yet, sheer avarice. I find that presupposition erroneous and misleading but I hope you'll reconsider the premise.
Jim
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Your tumor by measurement is small enough to give yourself some time to research. I know that Shands in Gainesville does the surgery. I think his name is William Friedman (not positive). I consulted with him a few years ago because I live in Florida also. I ended up at House Ear in LA.
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Just curious but why did you end up at house. Any information about that facility would be appreciated.
Thanks
John
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Hi John, and welcome!
I'm not in Florida, but forum member Nancyann is - just not sure if she's near you or not. You can do a search and contact her. I'm sure she'd be happy to give you whatever information she might have.
As others have said, you have time to do your homework and decide on a treatment choice. If you haven't already, order some of the free informational brochures from the ANA. They are very helpful and explain things very well - and they come in handy to show to family members so they can understand what you're dealing with.
Good luck to you!
Lori
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ANs are typically removed by a team of docs - for example, I had a neurotologist and a neurosurgeon - but that's not 100% true of every place.
I believe Dr. Bartels is in Florida. I've heard his name a lot on the Forum. And I've also heard of Shands. You might want to search the Forum for more info.
Jan
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Hi John, My wife and I live in Leesburg, and she was diagnosed last December. We went to see Dr. Max B Meadry in Orlando. Got his name from the ANA website. We were impressed with him. He operates out of Dr. Phillips, and said he has done about 200 AN surgeries. We are in the W and W club, and scheduled for another MRI in June.
Gary
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I live in West Palm Beach and travel to Tampa for my docs -- Dr. Danner and Dr. Bartels. They and their staff are great. Have heard on this forum that Dr. Friedman is also good.
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Hello John, and welcome!! As you can tell, you'll get a plethora (whew, had to dust of that word, haven't used it in a while!) of advice here. Please continue to ask questions and get as much info as you can! Good luck!
Jay
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Hi
I don't have any experience of Surgeons in the USA however in England best practice is to be seen by a Multidisciplinary team eg neuro, otology and oncology - and if you have a choice the final decision is yours. If the AN is large then there is no choice it has to be removed. I find choice confusing and the hardest decision to make especially in relation to treatment options for my AN. I have spent the last 3 years researching AN and treatment options, I have made my decision but it does not make the thought of treatment any easier, I remain very scared. My decision is not what was recommended to me by the MD team, I remain unconvinced that their recommendation is unbiased. It is not an easy decision to make but one that you must take time to research especially if you have choice and time then with research the knowledge will follow to assist in the treatment decision making process. We then place our trust in the experts that the outcome will be good.
regards, Irenuk.
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Thanks for all the responses. My neurosurgeon told me that with Gamma Knife I have a 50/50 chance of losing my hearing in that ear. I have since been to an Otologist who tested my hearing to establish a baseline and I have about 84% hearing in my right ear 100% in the left ear. The Otologist scheduled another MRI for mid June. I want to preserve as much hearing in my right ear as possible. Is it true that the chances for total hearing loss are 50/50? What are the long term outcomes for Gamma Knife? Has Gamma Knife become generally routine with similar outcomes regardless of where they are performed or should I seek a leading expert and travel to that location?
Thanks,
JohnB
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Hi John,
My AN had grown 2 mm (from 13 mm to 15 mm) in my 6 month followup MRI after being found in my first MRI, so it was recommended I have it removed, but watch and wait is certainly an option to consider. My neurotologist (Mass General in Boston) has 1200 patients that are watch-and-waiting!
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Hi John! There`s alot that goes into making a decision which will be you course of action. Fortunately with small AN you have much time to do this. As an example, I chose to W+W around 4 years ago with a 1 CM AN and been going 1 time a year for MRIs. With a course of healthy living (under W+W posts) Iv`e been stable and feeling good. With each decision very personal I wish you the best and am sure everthing will be fine. Mickey