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Author Topic: Dr.'s experience  (Read 3912 times)

teripo

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Dr.'s experience
« on: January 16, 2012, 07:53:55 am »
I have a 1.8 size AN that was diagnosed in June 2011.I went to 6 different doctors.I am thinking I want to go to Wintrop in Long Island to Dr. Haas.My concern and my families concern is what if it didnt grow.?Shouldnt I get another MRI to see that info first?I had what I perceive as a progression in this disease which was a couple of dizzy days which I took a Bonine type med for and now it has "gone away" for now.My other concern is the amount of time he said he has done this treatment..."100-200".I live close to the city and I am ready to pull the trigger on this {no pun}wondering if I should just go there and get treatment.Dr. Haas also teaches this CK procedure.I am so confused...
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TJ

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  • 1.2 cm AN right side, CK November 2010
Re: Dr.'s experience
« Reply #1 on: January 16, 2012, 01:42:54 pm »
Teripo

Making the decision is one of the hardest parts of the journey.  Everyone will tell you that you want a doctor that has a lot of experience.  I would like to say that yes that might be important, but in my opinion you need to feel comfortable with the doctor.  Your AN is still considered on the small side so you might have time to wait for another MRI to verify growth.  And yes, you certainly are still withing the CK range if that is what you choose.

It can be overwhelming, but take your time and make the decision that is best for you.

TJ
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Jim Scott

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Re: Dr.'s experience
« Reply #2 on: January 16, 2012, 04:59:29 pm »
Hi, teripo ~

I believe we've previously exchanged messages concerning Dr. Haas. 

I underwent AN debulkling surgery in June, 2006 (in New Haven, CT) and, as planned, FSR to destroy the DNA of the remaining tumor, in September, 2006.  Dr.Jonathan Haas was my radiation oncologist.  He had just taken a position at The Hospital of Saint Raphael in New Haven and I was fortunate to have him because he soon left there to move back to Long Island (Winthrop).  I found Dr. Haas to be an outstanding, energetic, optimistic physician that I immediately felt confident having 'map' my 26 FSR treatments.  My trust was rewarded with treatments that proved to be both easy and effective.  I suffered no so side effects - and the remaining tumor obediently began to show necrosis and shrinkage.  Today, over 5 years later, I'm doing great!  I highly recommend Dr. Haas. 

However, the doctor you chose is clearly a very personal, individualized decision and if you are not completely comfortable with Dr. Haas and his experience, then you should act accordingly.  I can only offer my experience with him - and it was excellent - but certainly not a guarantee that you'll have the identical experience.  As for the 'watch-and-wait'  approach, that, again, is for you to decide.  I do hope you'll make a decision you're completely comfortable with and that, whatever you decide to do, it will be ultimately successful for you.

Jim
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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.

JAndrews

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Re: Dr.'s experience
« Reply #3 on: January 16, 2012, 07:44:23 pm »
Thomas Roland at NYU was as highly recommended as Dr. Brackmann at House was by my local ENT.
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2.5cm x2.0cm cerebellapontine angle meningioma. 100% removal 2/2009. House Ear Institute. Dr Brackmann and Dr. Schwartz. SSD right ear. No balance problems except when really tired, no headaches. Transear hearing aide made no difference, tried it for 4 months.

leapyrtwins

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Re: Dr.'s experience
« Reply #4 on: January 16, 2012, 07:47:48 pm »
How far are you from NYC?  (I'm geographically challenged)

There are numerous wonderful doctors there - Roland, Golfinos, Selesnick - just to name a few.

Search the ANA's Centers of Excellence on this web site's main page under doctors/facilities.

Also, contact the ANA and ask them for their information brochures - they are very well-written and you'll find them invaluable.

Good luck,

Jan
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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

JLR

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Re: Dr.'s experience
« Reply #5 on: January 17, 2012, 06:44:38 am »
Hello...I would certainly go back to your ENT and have another MRI. See if your AN remains the same or if their has been any growth.  Keep in mind the recommendations for CK is when the AN is 3.0 CM and under. You wouldn't want the AN to grow and then have to consider surgery.  Please know that Dr. Jonathan Haas is an amazing doctor with a fantastic staff. I had CK Dec. '10, and there has never been a time where I called for any concerns that this doctor did not pick up or call me back.  Its a win-win with Winthrop BUT its a decision that you have to make..just don't wait too long. Best regards, JLR
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Richard_T

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Re: Dr.'s experience
« Reply #6 on: January 18, 2012, 02:56:40 pm »
I agree.  I have been diagnosed with a 2.2 cm AN.  When I consulted with Slattery at HEI, he was the only one to suggest that I have MRIs at 4 months rather than 6 months to avoid the possibility of the AN growing out of the radiosurgery range, since 2.5 cm is so close a ceiling for me to have radiosurgery.  So, I would be very precise with time and watching, if you decide to W & W.  Your 1.8 cm is not so far away to want to watch it closely.  I decided to act without another MRI over any significant period out of concern that if the AN acted aggressively, it would immediately reduce my options by foreclosing radiosurgery.  That was my personal choice and I'm not saying that my choices are appropriate for you or anyone else, but you certainly should consider the timing issues.

Richard
« Last Edit: January 18, 2012, 03:11:27 pm by Richard_T »
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1.9 cm x 1.6 cm x 1.8 cm AN diag. 12/09/11
CK at Stanford 1/20/12

teripo

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Re: Dr.'s experience
« Reply #7 on: January 27, 2012, 07:14:16 am »
Thank you for all the responses.I also called the Dr. Haas office to find out about financial help..my insurance pays only 70%,and I wanted a estimate of cost{with 3 doctors and all}.I thoughtthat was a good question also,not that its as important of course.
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