Author Topic: considered all options- chose gamma knife perfexion  (Read 6571 times)

alsummers

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considered all options- chose gamma knife perfexion
« on: January 31, 2008, 07:26:09 pm »
I was diagnosed with a medium (1.6 cm) acoustic neuroma the day before Thanksgiving.  I am 58, in excellent health, and absolutely did not want to "wait and watch."  At first, I wanted nothing to do with a radiation treatment, so I went about consulting with surgical teams around the country (if you want to know who and what they said, email me personally) with the idea of getting the tumor into a different zip code.  I was flying back from a consultation really feeling glum about the time in the hospital, the recovery time, the likelihood of losing my hearing (I still had 96% word recognition in that ear.)  I was awaiting a call from Dr. Melvin Field in Orlando.  I had sought him out as he trained in a method of open surgery that seemed to be less invasive.  When he called the next day, he said I was making a mistake by having open surgery.  He told me that my neuroma was the perfect candidate for radiosurgery.  It was still relatively small and it was not touching the brain stem.  He also said words that changed my path forever.  He said "If there is one kind of tumor you want in your head, it would be this kind.  It won't cause any harm as long as the growth is stopped."  I would have gone to Orlando and had him do the gamma knife but he said they did great work in Pittsburgh and that was much closer to my home in Columbus, Ohio.  He mentioned specifically a Dr. Dade Lunsford.  As I researched the University of Pittsburgh Medical Center (UPMC), I found many interesting and provocative things.  First, they were the first gamma knife center in the US.  Second, Dr. Dade Lunsford is the Co-Director of the Center for Image Guided Neurosurgery and the Lars Leksell Professor of Neurological Surgery.  (Lars Leksell, by the way, is the inventor of the gamma knife.)  Third, the UPMC is the ONLY center in the US that has the new Perfexion Gamma Knife.  All these sold me on UPMC and Dr. Lunsford.

I sent my MRI pictures and other test results to Dr. Lunsford and we set up a consultation.  The consultation was Monday January 14 and we were both satisfied, so the treatment was set for the next morning- in the new Perfexion.  Everything went well- I don't remember much about the day, just snippets.  When Dr. Lunsford came in to talk to me and my wife, he said that everything went well and if she would do all the driving, we could drive on home to Columbus that same day.  It was great sleeping in my own bed that night!

I am almost three weeks out and everything is going great.  I have set up my six month MRI and consultation for July and I am going back to Pittsburgh because I like and trust Dr. Lunsford.  I realize it is too early tell the full result, but doing it on an outpatient basis and being back to work the next week sure beats the 5-6 days in the hospital and three months recuperation- not to mention the loss of hearing and the likelihood of losing the hearing.

Go to http://www.neurosurgery.pitt.edu/imageguided/index.html to read more about the University of Pittsburgh and their Center for Image Guided Neurosurgery.

By the way, the folks at Pittsburgh told me that the biggest advance in the Perfexion Gamma Knife is for cancer patients with multiple tumors.  The 4(C) model would have worked just as fine for me.

goinbatty

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Re: considered all options- chose gamma knife perfexion
« Reply #1 on: January 31, 2008, 08:22:50 pm »
I also consulted with Dr. Field, among many others.  He was good at explaining the options, pros/cons. 
Glad to hear you're doing well. 
1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

sgerrard

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Re: considered all options- chose gamma knife perfexion
« Reply #2 on: January 31, 2008, 11:38:57 pm »
He said "If there is one kind of tumor you want in your head, it would be this kind.  It won't cause any harm as long as the growth is stopped."

That's a great line, and one to remember for others asking about radiation treatment.

Pittsburgh was also where they published some important clinical studies back in 1997, that really opened the doors to treating more ANs with radiation. If I had I been on the east coast, I might well have tried to go to Pittsburgh.

It sounds like you have done very well, and are on your way to a good result, congratulations. Thanks for the post, and welcome to the forum.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

pearchica

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Re: considered all options- chose gamma knife perfexion
« Reply #3 on: February 01, 2008, 03:44:54 pm »
Nice posting alsummers- thanks for sharing your experience- it's so great that we are getting all these resources together.  Thanks again and congrats on being on the other side with us posties!  Take care, Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

mema

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Re: considered all options- chose gamma knife perfexion
« Reply #4 on: February 01, 2008, 05:51:16 pm »
My hubbys surgeon (we call him our own personal doc) because he saw and worked on my husband many, many times over a 5 year period, at Tampa General.    When I mentioned my AN to him He told me about University of Pittsburg and Dr. Lungsford  and had nothing but praise.  So I'm sure you made the right choice.



                                   mema
6mm x 8mm left AN FSR 26 treatments Nov.-Dec.2005
MD Anderson Orlando, Fl.

Anasazi42

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Re: considered all options- chose gamma knife perfexion
« Reply #5 on: July 19, 2011, 11:17:58 am »
Just wanted you to know Dr. Melvin Field was my neurosurgeon here in Orlando, FL. I'm writing my AN story and will post it when I'm done but just wanted to add to this thread by saying Dr. Field was wonderful and I highly recommend him to anyone looking for a neurosurgeon in the Orlando, FL area.
Diag. Dr. Saffran ENT 3-9-11; 45 yrs at time of diag. 3.5+ cm AN rt side; 9 hr retrosigmoid craniectomy 5-12-11 FL Hosp. South, Neurosurgeon Dr. Melvin Field; Gold wt implant
Post-op: facial para. (rt), double vision (cleared up), SSD, tinnitus, balance issues, ataxia, movement disorder

vsfunkhouser

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Re: considered all options- chose gamma knife perfexion
« Reply #6 on: August 11, 2011, 06:17:28 am »
OMG... your story sounds exactly like mine!!!!  I just wanted this "thing" out of my head ~ the sooner the better.   I had visited my Neurotologist first and he recommended the Translab surgery and so I was preparing for surgery but had to consult with the Neurosurgeon on August 8th (my surgery had been scheduled for September 1) who was the co-surgeon on my surgical team and he said .... why are you choosing surgery!  He was most concerned about the facial paralysis as my hearing has all ready been compromised.  He suggested that I at least consider the Gamma Knife procedure and referred me to the Cleveland Clinic.  Since that time I have spoken to several local people who went to Cleveland Clinic... they had great care and a successful experience.  Again... they perform the Perfexion Gamma Knife surgery.  The clinic called for an appointment yesterday and I was not available.  Planning to schedule the consult today! 

I am so thankful that the Neurosurgeon suggested that I take my time and "really" think about the procedures, the complications and all of my options.  Glad to hear your procedure was a success... I am looking forward to this appointment and getting this behind me. 

Continued Recovery... Victoria  ;D

LisaP

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Re: considered all options- chose gamma knife perfexion
« Reply #7 on: August 15, 2011, 04:54:02 pm »
Hi,

I have had three and a half years to think about it with my next MRI this Oct.  I am now leaning more towards radiation if the MRI shows that my AN has grown.  I have read alot about both procedures both are scary but surgery scares me more.

Best wishes,

LisaP ;D
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

Vivian B.

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Re: considered all options- chose gamma knife perfexion
« Reply #8 on: October 03, 2011, 09:32:46 pm »
Hi Lisa,

That was my take exactly. When I first heard about radiation, I thought no way, but when I considered surgery, it freaked me out even more. Basically it was chosing the one of the worst of two evils but the one that you are comfortable with and that you know you can handle.
Once you have determined that, you are good to go.

Vivian 
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.