Author Topic: Doctor Reccomendations In New England and Tri-State Area  (Read 6098 times)

CTPatient

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Doctor Reccomendations In New England and Tri-State Area
« on: May 20, 2009, 05:01:18 pm »
Hi Everyone,
I'm new to the group so hopefully I'll get the hang of this.

I was diagnosed with an AN in my Right Ear about a year and half ago.  I was fortunate to have no/slow growth in the 1st year.   Last MRI show grow making tumor around 1.9.  I've been told 'watchng/waiting' is no longer an option.  I've seen doctors at Yale and NY Eye and Ear Infirmary.

I'm strongly considering Gamma Knife.  Has anyone had Gamma Knife at Yale?  If yes, are you comfortable sharing your experience. 
And I welcome any recommendations.  I spoke to a member who highly recommended University of Pitt and a Doctor in NY recommnded John's Hopkins.

Thanks
CT Patient

Kate B

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Re: Doctor Reccomendations In New England and Tri-State Area
« Reply #1 on: May 20, 2009, 07:51:56 pm »
Hi there,

Welcome and you are doing the right thing by investigating your options.

Here is another thread with some recent studies about GK. http://anausa.org/forum/index.php?topic=9486.0

I have been on this forum and before that the listserve since 2001 and can share waves of conversation.  UPMC is a highly regarded Gamma Knife Center in the Northeast with Dr. Lunsford and Dr. Kondziolka.  http://www.acousticneuroma.neurosurgery.pitt.edu/

John Hopkins was a facility that used to get much attention as the majority on the earlier listserv went there for FSR when Dr. Williams was alive. (premature death) My understanding is that Dr. Rigamatoni is equally impressive. John Hopkins also has a listserv that you can join and request information.  Dr. Rigamatoni used to respond on it as well.

Another Northeastern facility is in Rhode Island with Dr.  Georg Noren. http://www.drnoren.com/patient_info/gkrot.html

There is a group on this forum that have done CyberKnife (CK) at Stanford with Dr. Cheng albeit that is the opposite side of the continent.

I know others will respond.


Kate
« Last Edit: May 20, 2009, 08:44:09 pm by Kate B »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

CTPatient

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Re: Doctor Reccomendations In New England and Tri-State Area
« Reply #2 on: May 21, 2009, 04:28:13 am »
Hi Kate,
Thanks for welcoming me and the information you've provided.  I will review the information.
I spoke to a patient, yesterday, who had Gamma Knife at Pitt which was very helpful and am speaking to a patient in CT who was treated at Yale.

Thanks again for your reply. 

Sally

ppearl214

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Re: Doctor Reccomendations In New England and Tri-State Area
« Reply #3 on: May 21, 2009, 05:49:29 am »
Hi Sally,

Will agree with Kate about Dr. Georg Noren in Providence. He does a great deal of GK for the New England area and has played around with "fractionating" (multiple low doses) vs. single shot GK. He is the premier GK in New England.

Tufts University (just outside Boston) does GK as well. There are a couple of folks on this forum that have had recent GK treatments at Tufts and monitoring their progresses as well.

Boston... can't say enough about AN treatments in Boston (much closer than traveling outside of New England).

Many  of us have had Cyberknife in Boston (myself included... I live on the Northshore of Boston).  Some of us have had CK at Beth Isreal Deaconess in Boston (down the street from Fenway Park).  They just opened a new CK unit at Boston Medical Center as well.

Novalis is offered at Brigham/Woman's.  They have a good team there.

Proton Radiation is offered at Mass General Hospital. There are many here that have had treatments by Proton at MGH.  One not so successful and waiting on outcomes from a few others.  Proton is expensive and not much data re: efficacy on AN's, but am following along with a few to see how they are doing.


Hoping this info helps.  Available to answer questions about any of the treatments offered in Boston/New England and can point you to those that have had these treatments noted so they can share their own personal experiences.

Glad you found us here... welcome!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

CTPatient

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Re: Doctor Reccomendations In New England and Tri-State Area
« Reply #4 on: May 21, 2009, 08:09:35 am »
Hi Phyl,
thanks for the reply.
Would love to discuss CyberKnife vs GammaKnife. I'm also confused about single dose vs 'fractionating'.  Seems like there is much data on single dose coming out of Pitt on the benefits of Gamma Knife.
Also, welcome your experience on deciding on CyberKnife vs Surgery, my doc is telling me I can do either..its great to have options but sometimes tough making the final deicion.
Appreciate your help.
Sally

ppearl214

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Re: Doctor Reccomendations In New England and Tri-State Area
« Reply #5 on: May 21, 2009, 09:16:23 am »
Hi Sally,

glad to help.

suggestion... check out this thread in the "Radiation/Radiosurgery" forum re: CK and GK

http://anausa.org/forum/index.php?topic=6788.0

and this one......

http://anausa.org/forum/index.php?topic=9003.0


Great discussions and IMO, worth a peek.

There have been many discussions re: CK and GK in the Radiation forum, so maybe take a few minutes to peruse it to see if you find info of interest. If there is something specific but can't find, go the the Discussion forum home page (where all the forums are listed)... top left is the "Search" option/box... type word/phrase of particular interest (ie: Dr's name or a specific location, etc) and you will see search results for what you seek.

I'm more than happy to share about my personal CK journey if you want. You can PM (email) me on this site and glad to help.  You will see the option for my email right here to the left (the PM option), under my picture of me in Steve's hat he made for me :)

Hang in there...we're here to help.
Phyl
« Last Edit: May 21, 2009, 09:20:29 am by ppearl214 »
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

sgerrard

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Re: Doctor Reccomendations In New England and Tri-State Area
« Reply #6 on: May 21, 2009, 09:26:14 am »
Hi Sally,

I would focus on the radiation versus surgery question first. Is your balance okay? That is one area where radiation can sometimes be a problem.

Once you decide on radiation, the exact type is a smaller issue. Members have done CK, GK, and FSR, and had good results. Proton beam is maybe less certain. CK and GK seem to have very similar outcomes, with a slight edge to CK for hearing preservation. All of them are good, though.

Best wishes,

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.

CTPatient

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Re: Doctor Reccomendations In New England and Tri-State Area
« Reply #7 on: May 21, 2009, 12:10:13 pm »
Hi Steve,

Great question surgery or radiation, depends what day you ask me. 
My balance is fine and I have nearly perfect hearing in my right ear with mild symptoms (slight fullness in my ear).

I've been reading all the comments on Docs in NY and no one has mentioned Christopher Linstrom of NY Eye and Ear Infirmary, maybe I need to create another post asking all the NY patients if they've considered him.
Seems like NYU or Columbia is preferred.  And no one has mentioned Dr. Kveton or Dr. Piepmeir at Yale, but that could because there are not many CT residents.  These are the surgeons my ENT refers all there patients too with great success.

Sally

grega

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Re: Doctor Reccomendations In New England and Tri-State Area
« Reply #8 on: May 21, 2009, 12:31:59 pm »
Hi Sally,

Welcome .... and good luck in your decision-making process.  Lots of experienced brains to pick on this forum.

I had read your questions yesterday and, even tho I thought of mentioning my association with Johns Hopkins and the fine docs there, I decided against it since you were concentrating on GK.  I did consult with docs Rigamonti & Kleinberg before deciding on surgery.

But now, in your post a few mins ago, you said, "... surgery or radiation, depends what day you ask me."  So I guess referring to Dr Henry Brem, head of microsurgery, won't distract from your thinking ... he's a terrific guy and very experienced.  In case you need more info on JH & Dr. Brem, check out http://www.hopkinsmedicine.org/ .... then enter Henry Brem in the search box at top.

Keep us posted.  :)
Greg
1.5 cm AN retrosig 11/04.
Drs. Henry Brem & Michael Holliday @ Johns Hopkins, Baltimore
SSD right. Tinnitus big-time, only when thinking of it.
BAHA since 7/20/10 ... really helps w/ hearing, specially after programming in subliminal message: "Hey, don't listen to your tinnitus!"

Jim Scott

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Re: Doctor Reccomendations In New England and Tri-State Area
« Reply #9 on: May 21, 2009, 04:18:44 pm »
Hi, Sally ~

Welcome to our little corner of the internet, although I regret having an AN diagnosis necessarily brought you here.

I'm a CT resident (northeast corner, just outside of Waterbury).  I underwent successful retrosigmoid surgery for a 4.5 cm AN almost 3 years ago (6/06), followed by 26 FSR treatments, 3 months later as part of a coordinated plan to avoid facial paralysis and other complications.  This approach was highly successful.  The surgery had no post-op complications and the radiation treatments were uneventful with absolutely no adverse effects.  I drove to and from each 'session' (60-mile round trip) 5 days a week for 5 weeks.   My neurosurgeon was Dr. Issac Goodrich (Connecticut Neurosurgery http://www.ct-neurosurg.com/) and my radiation oncologist was Dr. Johnathan Haas, who has since moved his practice to Long Island.  Both my surgery and FSR treatments were performed at The Hospital Of Saint Raphael  (http://www.srhs.org/) in New Haven.  I highly recommend my neurosurgeon and the hospital. 

I know you're in the difficult fact-finding, decision-making process and I want to offer you my assistance, if you're interested.  Please send me a PM if you seek further information about my experience.  If you wish, we may be able to set up a telephone conversation if that is more convenient for you.  Again, contact me by PM and let me know if I can assist you - and my best wishes as you travel the road so many of us have traveled.  May your destination - a return to normalcy - soon be in sight.  :)

Jim
 
« Last Edit: May 21, 2009, 04:23:22 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Toccoah74

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Re: Doctor Reccomendations In New England and Tri-State Area
« Reply #10 on: April 05, 2010, 12:48:49 pm »
Dr. Linstrom at the NY Eye & Ear infirmary is the one who saved my life! He's amazing........

Lizard

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Re: Doctor Reccomendations In New England and Tri-State Area
« Reply #11 on: April 05, 2010, 08:12:36 pm »
I had retrosigmoid at UConn, and the surgeons were great.  Hilary Onyiuke and Gerald Leonard.  I recommend them, but take a look at the radiation as well.  Also, the Dr's were very responsive and I had visits from them everyday, but the aftercare was a little tough.  Make sure you have a great neurologist who is in tune to your situation prior to surgery so they can help treat any postie problems you run into.
Good luck with your decisions!
Keep us posted...
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

gary

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Re: Doctor Reccomendations In New England and Tri-State Area
« Reply #12 on: August 13, 2010, 10:15:29 am »
How does the VA stack up when dealing with vestibular schwannoma. I went to the VA a year ago, for a buzzing, they brushed me off, and a year latter I went to a private doctor, not knowing my wife had cancelled our health insurence for lack of money, and now I am forced into the VA system, in the Syracuse , NY area. I too am at the beginning of this situation, and am looking for the best options, with where I live. and looking for a doctor in the central NY area. Thanks 

grega

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Re: Doctor Reccomendations In New England and Tri-State Area
« Reply #13 on: August 13, 2010, 11:05:53 am »
Hi Gary .... suggestion on your questions today to get you more attention ..... start a new thread with your post at the top, since it's been such a long time since the previous post (April).

Greg

PS .... never mind .... I see you already did that an hour ago.
« Last Edit: August 13, 2010, 11:07:30 am by grega »
1.5 cm AN retrosig 11/04.
Drs. Henry Brem & Michael Holliday @ Johns Hopkins, Baltimore
SSD right. Tinnitus big-time, only when thinking of it.
BAHA since 7/20/10 ... really helps w/ hearing, specially after programming in subliminal message: "Hey, don't listen to your tinnitus!"

 


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