ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: nimmy on April 16, 2007, 03:27:47 pm
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December 2006, I was diagnosed with acoustic neuroma in left side. I had a hearing loss in the ear. Only 20% hearing left in that ear. I am a software engineer of 42 years old. Tumor size is XXXXXXXXX
Still I could digest /convince my self, I had a tumor in my head
I live in Connecticut.
I met
DR. Philip E stieg ( neuro surgeon) , Samuel Selesnick (otolaryngology) in new york presibitarian hospital of NYC.
Dr. kalmon post (neuro surgeon), sujana Chandra sekhar( neurotologist) in Mount Sinai hospital of NYC
Couple of days ago I spoke to Dr. Brackmann (Otoloryngology) and Dr. Hitselberger (neuro surgeon) on phone of house Ear Clinic of Los angeles. I mailed out my MRI CD to them.
All these doctors suggested surgery inclusive of Dr. Brackmann (Otoloryngology) and Dr. Hitselberger , because of my age and tumor size.
I took paid member ship in http://www.castleconnolly.com and http://www.mdnationwide.org/, which will display state wise best doctors.( if any body want to know the top doctors in a particular state, I can provide that information)
I took complete doctors profile related to few doctors through http://www.healthgrades.com
( If any body want these reports I can email them)
Questions:
1) I want to know the Top 2 doctors in neurotology and top 2 doctors in neuro surgery in the US ( what I sthe source to find) , not on the basis of state wise, who will do exclusively or majority of Acoustic neuromas. I do not want to keep insurance barrier or location barrier. I am ready to spend money. My hearing preservation is also very important for me. I want to make sure I am going to top notch surgeon in the US , so that chances of preserving my Hearing or chances of saving my nerves including auditory nerve will be more.
2) How practical it is to travel to a location which is more than 3 hours drive from the living place. Because in this forum , I Read that few guys traveled from east cost to west coast ( House ear Clinic, Los angeles)
Please help me.
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Hi Nimmy: Wow, you certainly are doing your research. Just remember, even with the best docs, they don't know what condition your nerves are in until they get in there, & unfortunately, complications occur even with 'the best.' That said, also realize that post op you will be revisiting the surgeons, so be sure you can 'make the trip'. Being further away from home, you'll probably need to stay at a hotel a few weeks, till the stitches are removed (mine were removed about 12 days post op), I'd be sure it's comfortable hotel, maybe get recommendations from the docs.
I wish you all the best my friend, take care, Nancy
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Hi Nimmy: I had 3 surgical consultations and fourth guy recommended cyber knife as option which I choose as I really didn't want to do surgery. I'm very happy with my results so far although with any radiation treatment you are looking at a longer time frame to resolution (3-5 years) for total cell death. For surgery or radiation, I would check out Stanford, Dr. Jackler is the head of the ENT and a well published surgeon. For radiation, contact Dr. Stephen Chang. Either should be able to help you out and I think they accept almost any insurance. Good luck with your research. Annie
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So, what have all your reports come up with? I was recommended to Dr. Brackmann by two different ear, nose & throat doctors. They told me he was the "creme de la creme" of Acoustic Neuroma surgery. I didn't do a mass research, but I did read a lot of his publications and found out that Dr. Brackmann and Dr. House pretty much wrote the book on Acoustic Neuroma removal. :) It worked out well for me and fortunately my insurance covered the entire thing.
Kristin
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Drs. Friedman and Schwartz, also of House, are superb!
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One of my recommendations is Dr. Michael Mckenna at Mass Eye and Ear Instit. in Boston. The doctors at House are also among the finest and so is Dr. Kalmon Post. Since you are so close to Boston, I owuld go see McKenna for a consult. Good Luck
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Dr. Rick Friedman and Dr. Marc Schwartz at House in LA were my doctors and I would highly recommend them to anyone. They patiently answered all my questions on the phone and after I arrived in LA and never seemed to be in a hurry to get to the next patient. Wishing you well in your search.
Jean
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Don't concern yourself with the where at this point. I would say that you should go to the person you feel most comfortable with, on west coast, east coast, India, whereever. I traveled from New Mexico to California to see Dr. Brackmann. I stayed in the hospital, then at the Seton Hall Guest center, kinda like a dormitory, which was basic, but acceptable, until I was seen in followup by Dr. Stephan, and okay to travel back, by plane, to New Mexico.
This is serious business. So i'd say to you to see whomever it is you think can do the best for you, under your set of facts and circumstances. My insurance tried to make me see a local guy, with only 40 surgeries under his belt. I fought, tooth and nail to see Brackmann, which my ENT and other local doctors all said was the best. I went, and have no complaints, and did do research, but I had a tunnel vision, and was set on Brackmann, after the wonderful things i've read here, and elsewhere about him, HEI, and their whole involvement in this AN field.
RON