Author Topic: Top 'Neurotology surgeon & 'Neuro surgeon' in US, with massive exp. in AN  (Read 23789 times)

nimmy

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Hey there Nimmy ..

  I'm also a computer/software guy :D AND living in Connecticut! ;D AND 42 years old! :( .... what city are you in? ..

  Its hard to say who the best doctors are .. House in LA are good...(Disclaimer: I went there) .. Mass General in Boston has several people here , NYC and Hartford CT ! experience is key! ask about outcomes and total numbers of operations .. and is surgery a necessary? how big is your tumor .. the rule of thumb guideline is anything over 3cm .(and placement of where it is). Please send me a PM if you want to talk more...

** say Phyll do we have room for one more for lunch **




hi  Joef,
I want to talk to you , if you have few minutes. This is my email address NeuromaSurgery@yahoo.com. Could you please provide me your contact number

Thanks

 

nimmy

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Hi,

I have a consultation with Dr. Post on 5/15.  I have a doctor in the family who suggested that I meet with Dr. Post.  He is believed to be one of the best neurosurgeons.  I know he is considered to be top notch.  Please tell me what your experience was with him.

Thanks,
jen

hi Jwh ,

DR . Kamon Post is MDNationwide.ord list best doctor in NYC. According to him he will do surgery part of both outside of bone and inside of the bone . Otoloringologist will only open the Bone. But when i speak to Otoloryngologyst( Sujana Chandrasekhar) , she told me that , she will do the Bone part ( Hearing nerve in inside of the bone)

I took  Complet report about kalmon post through Healthgrades.dom by paying $25. He had few settlements with patients. If you want I can mail out that repost . It is self explanatory.

But he seems good for me . But this is the contradictory.

Dana

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Nimmy,
You offered to send reports from your paid membership in  http://www.castleconnolly.com and http://www.mdnationwide.org/  about best doctors for ANs by state.  Would you be willing to send me report for state of Washington Seattle?  I'm a newbie with 1.5 cm AN, a healthy 58 year old, met with team at Univ. of Washington yesterday (Duckert, Rostomily and Rockhill - covering all three options: watch, microsurgery or gammaknife) but want to do further research on doctors, in addition, of course, to sorting through all my factors to decide on best treatment.
Thanks!
Dana
1.5 cm AN diagnosed June 2007.   GammaKnife July 19, 2007 at Univ. of Washington/Harborview GK Center, Drs. Rockhill, Rostomily. 
After yearly MRIs for 5 years, it hadn't died. So I'm now leaning strongly toward surgery.

NF-2er

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"because of my age and tumor size."

   Isn't Dr H. older still? Just something to think about.

   NF-2er



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 1.9 X 1.4 X 0.9 CM
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.



kristin

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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.
Brackman told me that his approach is Translab, with his experience Audirory Nerve cannot be saved
( chances are 0%) and he will put BAHA( Hearing instrument implant)

Question:

1) I heard Brackman is specialized in acustic neuroma, do exclusively acustic neuroma surgeries. but he is not giving me the hope. But how other neuro surgeons are giving me the hope?

I had middle fossa by Dr. Brackmann, so I'm thinking that you must have a decent sized AN if he's only recommend translab. He definately does more that just translab approach. When I was there, there were 2 or 3 more Middle Fossa patients. I've been in contact with a whole buncha Brackmann patients here on this forum that have had middle fossa as well. If he thought you were a candidate, I'm pretty sure he would have recommended it.

kristin in montana
8 x 5 mm Left Acoustic Neuroma
Middle Fossa
House Ear Clinic
Dr. Derald Brackmann, Dr. William Hitselberger
April 14, 2005

"I have told you these things, so that in me you may have peace. In this world you will have troubles. But take heart! I have overcome the world." John 16:33

NF-2er

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Hello;

   I feel Translab is a favorite among many Neuros and Otologists. It was developed and perfected by HEI Drs.

   One thing about Translab is that it really guts and cleans the middle and inner ear out so there is less chance of regrowth. It also affords a good view of the facial nerve for it's protection.

   If one is young as I was, I had no idea what was to come with another tumor on the other side years later. Lose both sides and one is basically screwed. Interesting to me is that I had an unexplainable abnormal ENG on the good side in 1977 during the time of the Translab.

   So; Along comes a more aggressive approach of Mid Fossa in which Drs. will now reach deeply into the CPA ( In it's early conception, they wouldn't perform a Mid Fossa with AN in the CPA ) for AN extraction and at the same time try to save hearing and balance.

   NF-2er

SteveWWD

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Re: Top 'Neurotology surgeon & 'Neuro surgeon' in US, with massive exp. in AN
« Reply #21 on: September 18, 2007, 04:45:24 pm »
Not sure where you are at with treatment.  I can tell you that I decided to go with Steig / Selesnik at NY Presbyterian and I could not have been happier.  And yes, I did lose my hearing, but given the choice again, I would do it all over again with them.  They are great.

rmcgurran

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Re: Top 'Neurotology surgeon & 'Neuro surgeon' in US, with massive exp. in AN
« Reply #22 on: September 26, 2007, 10:45:33 pm »
Hi everyone! 

First off, thank you, all of you, for participating in this Discussion board.  I'm a newbie and have been reading about 45 minutes.  I'm in the process of visiting doctors.  I'm not getting any solid answers regarding treatment of my AN that was diagnosed in early August with a measurement of approximately 2 cm.  The neurosurgeon and audiologist told me to go the GammaKnife way with surgery at a later time if needed.  The radiation oncologist told me I should have surgery to debulk it and return to him after 6 months or so for radiation to clean it up the remainder.  I'm confused and don't know which to do.  ???

Here's my question:  Are there any doctors in the Denver, Colorado, area that you choose to recommend or should I see about having my MRI mailed to Boston or Mayo?
Robbie

leapyrtwins

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Re: Top 'Neurotology surgeon & 'Neuro surgeon' in US, with massive exp. in AN
« Reply #23 on: September 27, 2007, 05:34:10 pm »
Robbie -

it seems to me that I read a few posts by someone who had treatment in Denver.  Try putting "Denver" in the search box under your user information; you'll probably find something that way.

Best of luck,

Jan
« Last Edit: September 27, 2007, 05:37:40 pm by leapyrtwins »
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

mjefts

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Re: Top 'Neurotology surgeon & 'Neuro surgeon' in US, with massive exp. in AN
« Reply #24 on: October 11, 2007, 07:48:13 pm »
hello:
my husband was recently diagnosed with a 4.3cm AN.  We live in Boston and are meeting with the Chiefs of Neurosurgery at MGH and Brigham and Womens over the next couple of weeks.  Surgery is our only option given the size and location (compressing the brain stem).  My question is this - can anyone recommend surgeons at Mayo/John Hopkins/Hearing Institute?  I am concerned that the New England hospitals don't surgically remove enough tumors of this size and would like to go somewhere with more experience.

Thank you,

Mary

krbonner

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Re: Top 'Neurotology surgeon & 'Neuro surgeon' in US, with massive exp. in AN
« Reply #25 on: October 11, 2007, 08:31:53 pm »
Hi, Mary!

While I won't discourage you from seeking other consults (getting many opinions is a great idea!), I do want to say that Boston has some great surgical teams.  There are many of us here treated very successfully in the New England area (personally, I had translab at MGH with Drs. Barker and McKenna, a team that has done hundreds upon hundreds of surgeries, with a fantastic outcome) and there are lots of options.

The New England "gang" is meeting for brunch in Worcester on Nov 11 (see http://anausa.org/forum/index.php?topic=3561.0 for details) and it might be a good opportunity to meet people in person - there are surgical and radiation patients with ANs of all sizes who have been treated in Boston and elsewhere.  It helped me a lot to meet and talk to people when I was in the decision making process.

In the end, though, what matters is that you are comfortable with your doctors - regardless of treatment choice or whether they're in your backyard or across the country.  We just want to help you make the decision that's right for you.

I hope you and your husband will consider joining us on the 11th. 

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

whity4d

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Re: Top 'Neurotology surgeon & 'Neuro surgeon' in US, with massive exp. in AN
« Reply #26 on: November 12, 2007, 04:22:28 pm »
Hi,

Dr Hitzelberger worked with Dr. House in developing the procedure that they use today. Dr Brackman and Dr Hitzelberger have done over 6000 surgeries. I went outside of Kaiser to get these doctors to do my wifes AN aprox 4 cm. They are the best and have done the most. In my book there is no substitute for experiance when it comes to a doctor and your health. I know that Dr Hitzelberger travels all over the country to do these surgeries so if you can't come to them at least he may be able to come to you.

Dan

 


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