Author Topic: How to choose a GK center  (Read 2538 times)

koch

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How to choose a GK center
« on: August 18, 2010, 05:53:33 pm »
I really need some advice on how to find the right GK center.  My Vermont ear doctor indicated that because GK is so mechanized, extensive experience in treating ANs is not important.  The more I learn, the more this advice seems doubtful.  So first I would greatly appreciate some feedback on how much experience people feel that a GK team should have.   

Without the benefit of this feedback yet, I am already resigned to needing to make one or more trips to Boston, around three hours away.  The GK program at Tufts has an impressive web presence but how would I find patient satisfaction surveys of this or any other center?  I believe there are a number of other such centers in Boston:  how to chose among them? 

Of course, I thank you in advance for any light you can shine on these mysteries.

ppearl214

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Re: How to choose a GK center
« Reply #1 on: August 18, 2010, 06:16:06 pm »
Hi koch and welcome.

Not knowing the specifics of your AN situation (ie; size of growth, exact location of growth -- in the IAC or sticking out, pressing or not against brainstem, etc), what I can tell you is this..... as one that had radiosurgery over 4-1/2 yrs ago in Boston.

I did an extensive amt of research into radio for my particular AN situation.  Choosing a radio center (regardless if GK or CK or Proton or Trilogy, etc) should be done with care.  Being able to know the # of AN's treated is important... IMO, I wanted to make sure that whomever "zapped" my head knew what they were doing.  I also inquired about "patient referrals" for the radio centers to see if they had "treated" patients willing to talk to me about the particular dealings with the radio-center.  I was truly lucky to find this forum (over 5 yrs ago) to help gain insight into the processes and happen to have those on these forums that knew of particular teams and how they did.

I do know, from a New England standpoint, that Tufts does have a great GK center. There is a user on this site named "helga" that was treated at Tufts and would be a good resource.  I also know that Dr. Georg Noren in Providence is a leader in GK, regardless of where in the USA.  He's been on the forefront of experimentation with GK (ie; fractionating vs. single dose, etc) and I know of folks that were treated by him that were happy with their results.  I know, first hand, of other radio treatments in Boston such as Cyberknife and Proton that many of us have had and are pleased. 

In fairness, I also know of some that did not have the results they hoped.  As with any AN treatment option, there are risks, success rates, after affects, etc to take into consideration.

To help determine what will be best for you and your situation (as we tout here, it is a highly personal decision and should be done based on your situation, from the AN itself to insurance to travel distances, etc), see if any of the centers you are researching will give you direct patient references.  I can speak on behalf of personal experience of Beth Israel and Brigham/Woman's as I have 2 teams in place for my AN.  I know of many here on the forums that can speak to Proton treatment at Mass Gen Hosp/Mass Eye and Ear..... and as noted, I know of Helga for Tufts and one or 2 for Dr. Noren.

Suggestion is to do a "search" option on these forum home page for the particular centers (ie: type "Tufts" in the search box or "Beth Israel", etc)... you will see past discussions for many of these centers based in New England.  It should also help give insight.

I hope this helps. Again, welcome.
Phyl
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KathleenMary

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Re: How to choose a GK center
« Reply #2 on: August 18, 2010, 08:56:32 pm »
Being a newbie and having my second opinion  consulation with a neurosurgeon at the University of Colorado Medical Center, today,  I was impressed with this surgeon since in his 24 years as a neurosurgeon he has had involvement with AN either surgically or GK to the total of 400 people.  From reading all of the various posts it is important to have good team with experience.  My personal feeling is a "teaching hospital" is more often the best if it is available to one.  I wish you an easy time in making your decision. That is one of the hardest parts as far as I am concerned.
KathleenMary

nanramone

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Re: How to choose a GK center
« Reply #3 on: August 18, 2010, 09:41:45 pm »
I'll suggest University of Pittsburgh - can't be beat for GK experience in USA, made me feel at home, etc..and an added plus, Dr. Lunsford is a genuine, personable and humble man...you'll be in good hands

leapyrtwins

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Re: How to choose a GK center
« Reply #4 on: August 18, 2010, 11:11:14 pm »
Your ear doctor's advice is doubtful.

One of the things the ANA stresses to AN patients is that it is imperative that you are treated by a qualified, experienced doctor - be it radiation treatment or surgical treatment.

The main page of this website contains information on doctors and facilities that treat ANs.  It is not an all-inclusive list.  However, it IS a list of those doctors/facilities that qualify as Centers of Excellence - which means they have passed certain standards set forth by the ANA.

You may want to check it out.

Jan
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

Lizard

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Re: How to choose a GK center
« Reply #5 on: August 19, 2010, 11:50:01 am »
I'll suggest University of Pittsburgh - can't be beat for GK experience in USA, made me feel at home, etc..and an added plus, Dr. Lunsford is a genuine, personable and humble man...you'll be in good hands

I second this comment, UPMC has been at the forefront of radiation surgery for years.  My father traveled there in the late 80's to have a GK procedure for a bleed in his brain that was inoperable.  Great Dr!!!!
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"
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koch

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Re: How to choose a GK center thanks
« Reply #6 on: August 19, 2010, 08:04:58 pm »
Thank you very much for your replies, they are all very valuable to me.

leapyrtwins

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Re: How to choose a GK center
« Reply #7 on: August 19, 2010, 10:31:40 pm »
Good luck, Koch.
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

 


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