ANA Discussion Forum
General Category => AN Issues => Topic started by: lynnee on June 15, 2010, 09:53:59 am
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Hello,
I am new to posting on this site but have been reading since I was diagnosed with a R AN in May. I find this site incredibly useful and have joined the ANA and read the literature they sent. I just started reading the Medifocus guide. My AN is 1.4cm x1.2cm x1.3cm in the cerebellopontine angle and 8mmx4mm in the IAC. I'm in the process of seeing the specialists ( saw Drs. Bigelow,ENT and Judy NS) but want to consider CK. Does anyone know who does this in high volume in the PA area ?
Thanks very much,
Linda
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Hello Linda,
Dr. Barry Hirsch at the Ear Nose and Throat Institute on Lothrop St, Pittsburgh, Pa. does the cyberknife. I have their number if you need it.
Good Luck,
Cindy
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Thanks Cindy!
If you could pass that number on to me I would appreciate it. Is he affiliated with University of Pittsburg?
Linda
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I sent you a message with his phone number.
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U Pittsburg was at the forefront of radiation therapy, probably the best place you could go. I think they do GK not CK, but are reputable. The did my father's GK in the early 90's.
This is who I got in touch with for radiation:
Douglas Kondziolka, MD, MSc, FRCSC, FACS
Peter J. Jannetta, Professor of Neurological Surgery and Radiation Oncology
Much luch with your decision.
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Linda .....
Welcome to this forum of caring, supportive friends.
Dr. Kondsiolka was a presenter at the ANA Symposium in Chicago last summer and I was very impressed with him. He has a high reputation in treatment of ANs.
Also, Stanford in California is high on the list of experienced radiation treatment centers for treatment of ANs.
Let us know how you are doing.
Clarice
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Cindy,Liz and Clarice,
Many thanks for the information and the kind words. I really appreciate you taking the time to help me.
Linda
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Hello Linda,
You probably have much of the information on both Hirsch and Kondziolka from the others by now, but I will tell you I have met with both
several times. Each has a fine reputation. Konziolka does GK at UPMC , and that is whom I went to for my Gamma Knife last winter. I can't say enough about the quality of the procedure there. It is the platinum standard as they say. Hirsch also works out of UPMC and has a fine reputation and does conventional surgery along along with CK and FSR.
Where abouts are you in PA? If your closer to NYC I'm sure there are fine facilities there, but if your in the western part of the state Pitt is a good option. Actually in today's world, a few hours will get you just about anywhere. If I can help any further just let me know I would be glad to share any other information you may have questions on.
Bryan
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Thanks Byran for the info. I actually live in Delaware and thought PA would have some CK sites. I'm willing to travel to get the best care I just don't know how to find the places so I really appreciate your input. I thought of traveling to Stanford but the follow-up would be really hard and I'm hoping to find a doctor within driving distance. If you don't mind me asking how did you decide on Gamma instead of CK or FSR?
Thanks,
Linda
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Hi Linda, I did a lot of research on facilities and options all over the country. Pittsburgh is only 4 hours away for me and UPMC has an excellent reputation. I met with both Hirsch and Kondziolka on GK, CK , FSR and surgery. Hirsch felt I would be better off going with surgery ( retro-sig) and felt my tumor was a bit big for CK. Kondziolka felt I would be a good candidate for GK. Basically, I had all options available to me at UPMC and I was grateful for all of those options as some don't. I went back and did some more research on all these options and just felt that GK was the right thing for me. It just felt right. I have no regrets.
As for follow up care. Unless there is some kind of major problem, I will do all follow up MRI's at my local hospital and send the disks to Pitt. Kondziolka had told me after the procedure that I would probably never see him again. Lets hope.
As with some other facilities, you can send your disk to Konziolka so that he and his team can look them over and give you an opinion on pursuing GK. Before you have to travel you can get an idea if your a candidate. As for CK and other treatment consultations you'll have to make an office visit with Hirsch. Be prepared for about a two month wait. Hope this helps some. Bryan
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Thanks Byran,
I didn't realize that follow up could be done by sending the disks. I was thinking I'd have to travel each time to get MRI's done there. That makes things easier. I'm going to call Dr. Hirsch today and get an appointment for sometime this summer.
Thanks again and I hope too you don't have to see Dr. Kondziolka again.
Linda