Author Topic: Long Island AN Patients  (Read 4933 times)

teripo

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Long Island AN Patients
« on: July 25, 2011, 01:44:12 pm »
Was just diagnosed with 1.8 AN .I live on Long Island and was wondering if anyone else is in my area and has some experience to share about local Dr.s and hospitals?? I am thinking of NS/LIJ Hospital for SRS.Seems like a good enough hospital and Dr.s.Any input would be greatly appreiciated..

Jim Scott

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Re: Long Island AN Patients
« Reply #1 on: July 25, 2011, 03:40:53 pm »
Hi, and welcome ~

I don't reside on Long Island but I grew up there (West Islip/Babylon area) and my radiation oncologist was Dr. Jonathan Haas who, in 2006, was employed for a short time at the Hospital of Saint Raphael in New Haven, CT where he helped map my FSR treatment with my neurosurgeon and supervised the 26 sessions.  I found Dr. Haas to be efficient, knowledgeable and compassionate.  He is the Associate Director of radiation oncology at Winthrop University hospital in Mineola, Long Island.   http://www.winthrop.org/departments/clinical/CyberKnife/physician.cfm?jonathan-haas

I trust this information may be of some interest to you.

Jim
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.

teripo

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Re: Long Island AN Patients
« Reply #2 on: July 25, 2011, 05:30:53 pm »
Hi ,Thanks for the info.I will try to schedule an appt.tomm.I had one opinion so far but thanks to ANA i will pursue more opinions.I even called Ca. LLUMC for proton beam,I will send them info and see if I should travel for that kind of radiation.All this with a 3 year old in tow.I first wanted to  just get it over with,but with our great support i will put more into getting the best care if I can sift thru this all.I have an appt on Wed. @ South Nassau Hospital in Oceanside with Dr. Mullen.Have to find out if I can go to all these tomm with my Insurance.I know I cannot go to Dr Roland and Golfinos,because my ins will not pay.I can try like the sec told me at Golfinos to keep bothering them.

JLR

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Re: Long Island AN Patients
« Reply #3 on: July 26, 2011, 03:47:00 am »
Good Morning, I had CK in Dec. at Winthrop University Hospital, Jonathan Haas, MD  Dr. Haas heads up the CyberKnife Center there. He is a wonderful doctor, compassionate and most of all is available for any concerns or questions, whether on the phone or at an office visit. He runs a tight ship and all at the facility are a great group always willing to be helpful. I am post CK 6 months, with a few problems i.e. numbess, continued tinnitus (which will probably never go away) and feeling wonky most of the time. I can't seem to articulate the words that are in my head...but...the tumor is under control and eventually I will feel way better..but getting back to Dr. Haas, I highly recommend. His recommendation came from a physican at The Ear & Eye Hospital in Manhattan.  Good luck and feel free to contact me for any further info. JLR

teripo

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Re: Long Island AN Patients
« Reply #4 on: July 26, 2011, 05:21:42 am »
OH Thank you JLR! Wow this website is really great.I was wondering what your specific diagnosis was and systems.I def will call Dr. Haas today!

JLR

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Re: Long Island AN Patients
« Reply #5 on: July 26, 2011, 05:53:17 am »
Hi, If you go on the Winthrop site, click onto the Cyberknife site and then fill out the form..the nurse there will call you ASAP. Answer some of your questions, and most importantly let you know if your insurance will cover,and then set up the appt with Dr Haas or you can always call them direct. Be sure when you go to bring your MRI CD and report.  Keep me posted. Joan
(AN right side, 2.4 cm pressing gently on brain stem)
« Last Edit: July 26, 2011, 05:55:09 am by JLR »

nteeman

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Re: Long Island AN Patients
« Reply #6 on: July 26, 2011, 06:52:55 am »
teripo,

I reside on LI, and when I considered my best options I found a number of Surgeons in NYC.  My Neurologist recommended one and after research and consultations I went with DRs Bederson and Smouha at Mt. Sinai.  No regrets.  There are great surgical teams at NYU and Cornell as well.

Good luck,

Neal
Diagnosed 12/16/2008
AN 2.4 X 2.0 X 1.6 CM
surgery performed on 1/27/2009 Mt. Sinai Hospital, NYC
Dr.Bederson & Dr. Smouha
9:30am thru 5:50pm
http://www.facebook.com/neal.teeman

Mickey

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Re: Long Island AN Patients
« Reply #7 on: July 26, 2011, 08:20:27 am »
Hi teripo! Take your time to go over everything to gain knowledge and make a good decision. I agree with nteeman who I`ve met before and after AN surgery with excellent results. Get into Manhattan where they have the most experience in treating AN`s. Drs Roland and Golfinos are my choices from my research. I`ve been with them at NYU 4 yrs. plus W+W. Try to attend some AN meetings if possible. Best wishes, Mickey

Mickey

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Re: Long Island AN Patients
« Reply #8 on: July 26, 2011, 08:31:00 am »
P.S. Drs. Roland and Golfinos did work with me about some insurance problems and were very accomodating.  Mickey

teripo

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Re: Long Island AN Patients
« Reply #9 on: July 26, 2011, 06:20:23 pm »
Dr.Roland and Golfinos were my 1st choices but the secretary told me I would be getting a bill because they dont accept my ins and my ins doesnt pay for out of network at all.I really wanted to go to the city but I wouldnt know where to start?