Author Topic: Rocky Mountain vs. Pittsburg's Gamma Knife Center  (Read 6273 times)

leslieplomondon

  • New Member
  • *
  • Posts: 4
Rocky Mountain vs. Pittsburg's Gamma Knife Center
« on: October 12, 2011, 11:49:37 am »
Hi Everyone,

After eight consultations with neurosurgeons, I've concluded that the gamma knife radiation treatment is most suitable for my 1.38 sized AN.

I live in a suburb of Denver and would ideally like to seek treatment at the Rocky Mountain Gamma Knife Center so that I could come home and sleep in my own bed afterwards.  However, if the treatment at Pittsburg is significantly better than the Rocky Mountain Gamma Knife Center, than the travel would be warranted.

In terms of doctors, it's between Dr. Robert Breeze at the Rocky Mounatin Gamma Knife Center or Dr. Lunsford at Pittsburg.

Through this long process, I've lost all sense of diplomacy and even told the two that I'm trying to evaluate the services I would receive in Denver vs those in Pittsburg. Dr. Breeze in Denver was very nice and said that he felt the treatment would be identical. He even went as far as to say that if I were concerned about his abilities, I could ask Pittsburg about him.

I spoke to Dr. Lunsford of Pittsburg yesterday.  When I asked him the same question however, he admitted that he did know Dr. Breeze, but then got all huffy and said that the center at Pittsburg has been around longer with over 11,000 treatments conducted.

Does anyone have any thoughts or experience on the type of treatment I might receive by Dr. Breeze at the Rocky Mountain Gamma Knife Center in Denver vs that by Dr. Lunsford at the University of Pittsburg?

Thanks so much!
Leslie
Trust in God and He will help you; make straight your path and hope in Him. ~Sirach 1-6

Seamar

  • New Member
  • *
  • Posts: 31
  • Age 74
Re: Rocky Mountain vs. Pittsburg's Gamma Knife Center
« Reply #1 on: October 12, 2011, 07:36:02 pm »
Hi, Leslie,

As someone who is having a Gamma Knife procedure on October 27, I can understand your concern about having the best team treat you. I went into Rocky Mountain's website and see that they have had the Perfexion, latest and state of the art, since April 2009 - plenty of time for practice.  According to Dr Stephen C Rush, executive director of NYU's Gamma Knife Center and the radiologist-oncologist who will be involved in my procedure, the Perfexion is idiot proof.  It is programmed to irradiate only the tumor and no edges. As for the care you would receive before, during and after, the website indicates that you will be carefully monitored at all times.  But then, you may have gotten this feeling from Dr Breeze.

Certainly Pittsburgh has GK'd more AN's than Rocky Mountain, but I, myself would feel confident in Rocky Mountain's hands -- my 2cents worth.

Best of luck with your decision,
                                              C-Mar
   
7mmx1.2cmx5mm left AN
GK 10/27/11 with  Drs Golfinos, Rush and Han @ NYU Langone Medical Center

Relax...God is in control.

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7451
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Rocky Mountain vs. Pittsburg's Gamma Knife Center
« Reply #2 on: October 13, 2011, 04:41:36 am »
Hi Leslie and C-mar and welcome to you both.

Both centers noted are highly reputable in effective radio treatments of AN's.  There are many radio protocols (ie: GK, CK, FSR, Trilogy, etc) that are very effective in the treatment of AN's. Suggestion is to take a peek at our "Radiation/Radiosurgery" section of these forums. There has been, over the years, vast discussions of efficacy of each versions, technologies used, etc.

In our "Post-Treatment" section, you will also see many, including myself, noting our post-radiation outcomes.... some good, some not.  It truly is a situation of "individual results may vary" and we don't sugar coat things here.  There is no "idiot proof" version of radiation for any AN's (CK is LINAC robotic and image guided and yet, like all radio options, I personally know good outcomes and some not so good) but experience of the treatment teams is essential when chosing a treatment option (regardless if surgical or radiation).

What I can share is that your "gut" will help guide you to what is best for you and your particular, unique situation. Each AN is unique to itself (ie: location and size of tumor, your locale, insurance coverage, etc).  Best suggestion is doing your homework fully, taking use of info, such as these forums and info that the ANA office can share (including the home website) and most of all, patient referrals.

Rocky Mountain and Pitt are wonderful options (if you research the historical here on the forums). Either way, you will know what is best for you.

Hope that helps... and again, welcome to you both!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

mk

  • Hero Member
  • *****
  • Posts: 968
Re: Rocky Mountain vs. Pittsburg's Gamma Knife Center
« Reply #3 on: October 13, 2011, 07:15:28 am »
Hello Leslie

Of course experience is very important, but I also want to point out that follow up care is extremely important too. GK is a very well known and documented procedure and all the reputable centres should be competent, so I wouldn't worry so much about the number of procedures. However it is not unusual to have problems crop up months after radiation, and we have seen here way too many people who haven't had proper follow up from their radiation oncologists. In that sense, probably a centre closer to home might be able to provide better care on the long term.
You should ask what is the approach of each group for follow up care. Better yet, try to find some patients who already had treatment and see how the real follow up was.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

sarahinPA

  • Full Member
  • ***
  • Posts: 128
Re: Rocky Mountain vs. Pittsburg's Gamma Knife Center
« Reply #4 on: October 13, 2011, 09:06:39 am »
Hello Leslie,

I had gamma knife in Pittsburgh, by dr kondziolka. I had wonderful treatment there and nothing but positives to explain my experience.  Unfortunately, I experienced regrowth, dr kondziolka explained to me that in the 11,000 patients they have treated, only 9 have had regrowth. I was one of them. I can say that I would go to them again if I needed too and I am pleased with their treatment.

I did end up having my an removed, 10 weeks ago and am doing really well!

Good luck!!
2.3cm Diagnosed 12/19/08
Gamma Knife @ UPMC Pittsburgh 1/12/09
.2mm Regrowth 6/2011
Translab 7/29/11 @ UPMC
     temporary paralysis of throat-feeding tube 8 days; SSD; facial numbness; blood clot & pnemonia developed; 11 days hospital stay.

frenchjoey

  • New Member
  • *
  • Posts: 43
Re: Rocky Mountain vs. Pittsburg's Gamma Knife Center
« Reply #5 on: October 14, 2011, 11:18:30 am »
Hello,
I’m sorry I can’t be of much help concerning the choice of the right hospital or the right doctor since I live in France. But I am new on this forum and I’m also having GK soon (Oct31st) so I would just like to say that I will be thinking of C-Mar on the 27th sending all my positive thoughts from the other side of the ocean.
If you feel up to it lets us know how things went and then we can hopefully have a good laugh comparing different techniques and attitudes.
Talk to you soon.
Joey

windy

  • Full Member
  • ***
  • Posts: 165
Re: Rocky Mountain vs. Pittsburg's Gamma Knife Center
« Reply #6 on: October 14, 2011, 10:37:22 pm »
Hi Leslie,

There are some members on this forum that live in the Denver area.  Nancy Drew lives in the Denver area and had GK there.  I am sure she would not mind you contacting her.  I stay in contact with her (we are both from the Southeast) and feel sure she would be a lot of help to you!  I know she has met with a few people in the Denver area who have had AN's. 

I had GK in Pittsburgh.  I did have post GK problems and it was very hard to try and get help locally (since treatment was elsewhere) or try and resolve problems via e-mails to Pittsburgh.  I have also had growth, as well.  Hopefully, it has resolved.  I will have my next MRI in Dec. for a recheck. 

Let us know what you decide.  I wish you the very best in your treatment! 

Windy 
* Diagnosed w/AN (9mm x 11mm x 9mm) - 6-10-08
* GK @ UPMC w/Dr. Lunsford - 8-5-08
* Stable MRI - Aug. 2009
* 2 MM's Growth - Aug. 2010
* Lost 60% Hearing - Dec. 2010
* More Growth?? - Wait & Watch - Jan. 2012
* 1 MM Shrinkage - Aug. 2012
* 2 MM's Shrinkage - Aug. 2013
* Slight Shrinkage - Aug. 2014

Nancy Drew

  • Hero Member
  • *****
  • Posts: 666
  • Colorado Tree Hugger!!!
Re: Rocky Mountain vs. Pittsburg's Gamma Knife Center
« Reply #7 on: October 16, 2011, 07:43:36 pm »
Hi Leslie,

Hi!  I'm Windy's friend, and I live in Denver.  She emailed me about your situation, and if I can help in any way please feel free to contact me.  I will send you a PM with my contact info.  I had GK three years ago (Oct. 21st).  I haven't had my yearly MRI yet (going to schedule), but last year my MRI showed shrinkage.  I went to Swedish Gamma Knife Center, and my AN doctor was Dr. Robert Feehs.  I have had a few problems crop us, but I would say for the most part it all went really well.  My AN was discovered by accident, and it was very small.  I did W&W until it started growing.  I consulted with a Dr. at Univ. Hosp., and I had my case presented at the GK panel of doctors at Swedish.  All of the doctors basically said the same thing...continue to W&W (to see if the AN would continue to grow) or go ahead and have GK.  However, all said it was a good idea to get it treated while it was small because even small ANs can cause major problems.  It was emotionally draining to figure out what to do.  My initial doctor was Dr. Kelsall at Swedish, but I switched to Dr. Feehs because I was impressed with his experience, and I just "clicked" with him better (although I've heard that Dr. Kelsall is excellent).  I also met someone on the AN board who had GK with Dr. Feehs, and his situation turned out fine.

Dr. Feehs does, GK, CK and surgery so I thought that was impressive.  He was trained at Pittsburg for GK and at Stanford for CK.  Dr. Feehs recommended GK, but he was not against CK.  I think he was just more comfortable with GK since he had a lot of experience with it (more than any dr. in the Denver area at the time).  He was also partial to the headframe for Ans.  I decided to just go for it.  I still have my hearing, but the radiation did hit my balance nerve.  I am learning to adjust....compensation!  I have heard that Dr. Breeze is a good dr., and I think they have the newest generation GK machine at Rocky Mt.  I wouldn't be surprised if Dr. Breeze also trained at Pittsburg since it is "the mother of GK"!!!  Dr. Feehs told me that they were going to update their GK machine at Swedish...not sure, though.  I think the best thing about having GK here in Denver is that I have local followup.  I know that Windy has been frustrated at times with the lack of followup with Dr. Lunsford.

Hang in there (that's probably not a comforting thing to hear!!!).  It's hard making the decision, and it's normal to question everything.  I surfed this board like crazy before I made my decision.  Going with the gut feeling is by far the best way to go once you have collected your info.

Take care,

Nancy   
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

leslieplomondon

  • New Member
  • *
  • Posts: 4
Re: Rocky Mountain vs. Pittsburg's Gamma Knife Center
« Reply #8 on: October 16, 2011, 09:31:53 pm »
Hi Everyone!

Thank you so much for responding to my question. It's so nice to learn your thoughts and experiences. I never realized how comforting an on-line community could be until I met you!

I have taken all your suggestions and will continue to press forward in my research.

A million thank you's again for your kindness.
Leslie
Trust in God and He will help you; make straight your path and hope in Him. ~Sirach 1-6

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7451
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Rocky Mountain vs. Pittsburg's Gamma Knife Center
« Reply #9 on: October 17, 2011, 05:28:30 am »
Hang in there (that's probably not a comforting thing to hear!!!).  It's hard making the decision, and it's normal to question everything.  I surfed this board like crazy before I made my decision.  Going with the gut feeling is by far the best way to go once you have collected your info.

Nancy

...and you have been sorely missed!  :-*  Good to see you, Nancy! Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"