ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Kat From Indiana on May 26, 2014, 06:48:01 pm
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I have decided on Gamma Knife.
Indiana University has a GK Model C which has been upgraded to a Model 4C. They will be getting the Perfection GK in August. Thinking that the Perfection would be a better choice for me, I am not sure that I want to wait until August and even then, not sure I want to be one of the first on their new machine either.
So, I have been leaning toward heading for Pittsburgh as it is my understanding that they treat approx 60 AN with GK each year, while IU treats only about 7 per year. Then I heard that University of Michigan, MidMichigan has a GK center. Anyone know which location would have the most experience with the treatment of AN with GK?
I guess I am looking for the best place to go in terms of experience and equipment, somewhere within less than 700 miles from Indianapolis. Would love to hear from anyone who has more knowledge than myself in this matter. If my data statistics are inaccurate, please correct me? Thanks.
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I live in Ann Arbor, MI and initially sought services at University of Michigan when I was first diagnosed. First, U of M does not have a Gamma Knife machine. They use a LINAC to radiate tumors (https://www.med.umich.edu/radonc/pat_fam/LINAC.htm). Second, U of M's ENT and neurosurgery departments are very much a "surgery first" type of place. They overwhelmingly treat ANs with surgery or watch and wait instead of radiation.
I know there is another hospital in Southeast Michigan that uses GK, Beaumont or Henry Ford or one of those, can't remember. Maybe that's what you're thinking of? When I decided to go with GK I went to University of Pittsburgh because they have more experience than anyone else.
Adam
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UPMC in Pittsburgh meets all your criteria. They have the most experience out there with GK. They have preformed over 12000 GK treatments with over 1600 for AN's. They have a 97% success on tumor control. Simply put they are the platinum standard for GK treatment in the United States. I would say a little less than 500 miles form Indy.
UPMC image guided referral number. 412-647-7744. L. Dade Lunsford MD. Director.
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Thank you both. That's what I thought, but it's nice to have it confirmed. Now please indulge me, as I ask two more questions:
Should I ask only for Dr Lunsford, or is there another who will do just as well?
And, does Pittsburgh do more GK than The Cleveland Clinic in Ohio?
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I believe UPMC does more GK procedures than anywhere in the U.S. And Dr. Lunsford was the first in the country to do GK and brought the practice to the U.S. He's one of the very best. He's pretty matter-of-fact, not perfect bedside manner, but he's professional and reasonable.
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What Patrick said.
When I sent my stuff I specifically requested Dr. Lunsford and was placed in his care. However, when I was at UPMC I also got to meet and have a chat with Dr. Monaco III who seemed like a super nice guy. Other doctors who have worked with Dr. Lunsford have gone on to earn sterling reputations themselves (e.g. Kondziolka), so I have no doubt everyone on the UPMC GK team is great.
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Hi Kat-
Based on the experience you outlined below, I personally wouldn't consider IU unless I couldn't travel. Not enough experience in my opinion. I also specifically requested Dr. Lunsford and the Perfexion, as UPMC has 3 Gk units.
Best
-Robin
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Hi Kat,
I am also from Indiana... Almost. I'm 1 block north to the state line in Michigan. I have been researching like it's my only job in life for a year. Been everywhere, or it feels like it. I visited Dr. Lunsford in February, talked to many peeps on this forum and elsewhere, and I just made up my mind... Finally... And made an appointment for GK with Lunsford at UPMC in July. I'm so relieved that I finally made a decision, and it really is true that it's a gut feeling. If your insurance will cover you there, why not pick the guy who has the most experience and is considered the best? That is what I asked myself, and how I finally picked up the phone and called for the GK appointment . It took a long time, but now I feel sure. I hope you get that feeling, whatever you decide. I think it's important to have confidence in your choice. I drove out and had a consultation. I'd advise it.
Cathy
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Having just been treated here by Dr. Warnick partnering with Dr. Breneman at Precision Radiotherapy I wold give them a recommend. 160 AN's or NFS per year themselves and quite convenient location just north of Cincinnati.
http://www.mayfieldclinic.com/PE-Acoustic.htm#.U46NDvldVWE
Not trying to change anyone's mind just throwing the option out there.
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I highly recommend UPMC. My treatment for a relatively large AN exceeded my expectations. First class treatment in all respects.
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I called Dr. Lunsford on a Thursday and had an appointment for the following Monday. Saw him Monday 6/4/14 and decided to go for it. They even offered to do the procedure the next day so I wouldn't have to make the drive again, but my insurance would not approve on such short notice. So I am going back (provided my insurance comes through) and having the Gamma Knife on Friday June 13. Obviously, I am not superstitious. I am trying to get a room in the Family House for Thursday and Friday night. They want me to stay close by on Friday, but said I could leave as early as I want on Saturday. And so the journey continues.....
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Kat,
Good for you. I am so glad that you have come to a decision.
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Our wonderful neuro-oncologist, Dr. Jan Drappatz, relocated a few years ago from Boston (Dana Farber) to Pittsburgh. If you ever need that specialty, he's fantastic.
Sheryl
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I had GK at Beaumont (Royal Oak, MI) on 1-22-2014. My doctors were Peter Chen (radiology, one of the top doctors in America) and Dennis Bojrab of MEI. Very satisfied with my treatment so far, there were already signs of necrosis in the tumor when I went back for a post treatment MRI.
Good luck with your decision!
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Follow up for anyone who may be interested: I had GK in Pittsburgh June 13. Now, I don't want to jinx myself by saying this, but it has been one month and a couple of days ago I noticed that my crooked smile is no longer crooked! Coincidence? I can't say for sure, but I am very happy. I also believe that I am having less balance problems. The ringing continues, but there are times when I don't even think about it anymore. I have already decided I will not let this define me and I will NEVER be a victim to this "situation" which has presented itself to me. I know that there may be ups and downs in this journey/process, but I am choosing to take each positive as a blessing and any negatives as just another life lesson.
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Hi Kat From Indiana,
Your inner strength and great perspective will serve you well through this, and, I'm guessing, any other curves life throws your way. Thank you for being an inspiration for others on this forum!
All the best,
Petrone
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Hi Everyone, I am 43 and recently diagnosed with bilateral AN or vestibular Schwannomas also known as NF2. I'm having a difficult time choosing surgery or radio. Both AN's are under 1.5mm and hearing is good on both sides with the right a little less. Ipthese forums make it difficult to know everyone's diagnoses so forgive me... Should I at least consult with Pittsburgh. I live just north of Detroit in michigan and have seen dr. Babu from michigan ear institute who has been great through all this. I have results going to house clinic in Los Angela's CA and DR. Bradley Welling massachuttes ear and eye infirmary. This week I meet with my neurosurgeon and should hear back from house and mass. My question would be is gamma safe for long term hearing preservation and cancer? I too have been researching like crazy and reading case studies and surveys with no conclusions. Not positive I want to go the surgical route and thought I would seek out as much information as possible. Thank you everyone in advance.
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Hi Kat, I am so happy to hear this! My appointment with Dr. Lundsford is next week, July 29. Thank you for your positive news and outlook. It sure helps.
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Cathyroe,
You helped me too! There is another newbie who had GK on the same day as youself. Suzannelowensohn is from Colorado and is having GK on the 29th also. Maybe send her a message? Best Wishes for a very good experience! Gave them 5 out of 5 stars.
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Kat - great news - hope it continues. Thanks for the followup.
Sheryl