Treatment Options > Radiation / Radiosurgery

Beth Israel CK or Tufts GK or Dr Noren Providence

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jacktripp:
I need information on all three from all out there please

1) Beth Isreal is extremely new. Would I get better results if I want CK hopping on a plane and going to Stanford?

2) Has anyone out there been treated at Tufts? What is your experience and why go there vs RI to Dr Noren. Is their equipment more up to date? Do they have more current knowledge?

3) Has anyone out there been treated by Dr. Noren? What is your experience.

Thanks so much for the information. I have always used the rule that the more someone does something the better. Beth Isreal is so new. Tufts I know nothing about. Dr. Noren has been at this since 1991 but is his knowledge current?

ppearl214:
Jack,

I had CK at Beth Israel 16 months ago.  My AN was just 1cm at time of treatment, with some hearing loss (minimal but some....).  I had fractions over 5 days and a total of 30 GY.

I had my hearing test yesterday at Brigham/Womans (my surgeons are there as back up should my radiation fail and they are also handling my Chiari 1)  and found that my hearing is the exact same as it was at the time of my treatment, thus, the feeling is that fractions over 5 days did perserve my total hearing (as noted by my audiologist).  I meet this Monday with the CK team at BI to go over my last images (taken last week).  My surgeon at B/W yesterday did look at the AN and noted that my AN has not grown (mine was growing at a good pace) and now has stunted in growth.  BI will review the films to confirm that the AN is officially dying as this is the timeframe that would confirm this.

The treatment team at BI has been very open and honest with me. I questioned them about why 5 days and 30GY total. They have all been open, honest and willing to listen to what I tossed at them.  They have always returned immediate phone calls to me.  I understand why they treated my AN as such and now, absolutely agree with the protocol they chose for me as I'm absolutely tickled with my outcome thus far.  I'm learning of more folks that are having 5 days/30GY with CK now and it may be a direction that CK some centers are taking to ensure hearing preservation.... I would need to dig up those name but they were not treated at BI to the best of my knowledge.  (Most have CK over 3 days with a total of 18-21 GY... I was the first one, to my knowledge, that had 30GY over 5 days).

Now 16 months later, I feel absolutely terrific, my days continue on as they did prior to treatment and I have to knock on wood that I am doing as well as I am. We joke about me being a "poster child" for Beth Israel's AN CK treatment...... Those on this site that have met me over the past year will tell you that, in my case, I have done extremely well with my CK AN treatment and I have no regrets in my choice.

You can read further about my CK treatment in this "Radiation/Radiosurgery" forum in a thread about CK for Newbies...

I personally don't know anyone that had AN treatment at Tufts.... I do know of some that had GK with Noren in RI (ellenvig is the first one that comes to mind). I know she is doing great (saw her last month at a brunch I put together on a quarterly basis). Her AN is also dying and she's doing great. I'm sure she'll be happy to speak to you about it (as will I).

I hope this helps... and wish you well during this decision making process.

Phyl

tony:
I cant comment on all the Docs - all I know is that Noren has been
doing this for ten years or more now
If I really had the choice I would rate a proven track record like
that very highly - still your call of course
Good luck
Tony

jacktripp:
Thanks Tony.

Did you use Noren and what was the experience.

ellenvig:
Thanks Phyl. 

Yes, I went to Dr. Noren and he was fabulous.  Very responsive, very caring, and I've had amazing results.  He is current and extremely knowledgable.  He even developed a fractionated GK protocol.

http://www.savyon.com/ellen/AN.htm

Ellen

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