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My Gamma Knife experience at UPMC (up to 3 year follow-up in comments)

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ASG:
I thought I would add to what others have done here and describe my experience with GK at UPMC.  I hope this is helpful for anyone wondering what to expect with Gamma Knife with Dr. Lunsford's team. 

My wife and I drove from Michigan to Pittsburgh on Wednesday.   We chose to stay at Family House- which is housing provided for UPMC patients.  Its a large Victorian looking house that feels sort of like a cross between a bed and breakfast, a hotel, and a college dorm.  It is partially subsidized, and so was only $60 a night and just a 5 minute walk from the hospital.  We weren't there long enough to get to know anyone else, but there is definitely a community vibe and feeling of comradery among the guests that I enjoyed.  The rooms were small but very nice and home-y feeling.

My pre-procedure meeting with Dr. Lunsford and his team was at 11am the next day.  We reviewed the history and characteristics of my tumor, how gamma knife works, and what to expect during and after treatment.  Dr. Lunsford reiterated that there is a very high likelihood GK will at least halt any further growth of the tumor (which would be considered a success), and a "reasonable" chance I would retain my current level of hearing.  I asked Dr. Lunsford if, in the event I lose serviceable hearing but retain some hearing nerve functioning, could I boost my hearing with a conventional hearing aid.  He said I could, but not everybody finds this worthwhile. 

The Gamma Knife procedure began at 5:45 the next morning.  Of course, I slept terribly the night before (woke up every hour to check the clock).  Once I checked in I didn't wait very long before the nurse took me back.  Step one was to take an ativan and get my IV in (for more relaxation meds).  I was already completely relaxed/semi-drugged up when Dr. Lunsford came in to put the head frame on.  The whole thing was so easy.  I really don't remember much, but I don't recall any discomfort.  Then I was wheeled off to the MRI where I took a nap.  Apparently Dr. Lunsford runs the MRI himself.  I was relieved to hear from him that my tumor had not grown at all since June.

The coolest part of the whole procedure was when the nurse was wheeling me back to my little waiting area after the MRI.  She stopped by the control room (a room with glass windows overlooking the MRI machine and GK machines) and pointed out that the Gamma Knife team was reviewing my slides and planning how to proceed with the radiation.  There was Dr. Lunsford, the guy who brought GK to the US, a radiation oncologist, and a friggin' physicist huddled around a monitor looking at MY tumor.  I could see them in the war room plotting critical coordinates and determining how radiation would be delegated to key areas of the AN such as the margin and where vessels intersected with the tumor (in order to destroy the blood supply to the tumor).

I drifted in and out of a few naps and watched some TV while I waited for the person in front of me to complete their time in the GK machine.  After about 40 minutes it was my turn.  I was excited to see that I was going to get to use the Perfexion machine.  I looks like a futuristic igloo.  Like everyone else has said, the machine is completely silent, you don't even know its on.  I snuck in a few more naps and listened to the CD I had made for the occasion.

I was able to walk back to my waiting area where they removed the headframe.  I got a headache and felt a bit nauseous after it was removed, but took some tylenol and felt OK about an hour later.  We went back to our room and I took a nap.  When I got up, I drank an iced coffee and felt like a million bucks. As I had resolved to do, we walked to Primanti Brothers for my victory sandwich (not the original location but they had one right in the area).  As you know its important to listen to your body after treatment, and at that moment my body was telling me to destroy a large pastrami sandwich with french fries on it, and an entire side of fried pickles.  It was glorious.

The next morning I took off the band aids covering the pin-hole sites.  I couldn't believe how small they were, they looked like tiny little specks!  Walking down the street you'd never know I even had the head frame on.  I was completely fine to drive back.  Since then I've basically felt like myself, just a bit more tired than usual.  I'm not sure if this is because of the radiation or the lack of sleep I've had over the past few days.  Only time will tell.

Overall, the entire experience was incredibly positive.  UPMC, Dr. Lunsford, and the whole gamma knife team really are absolutely first class.  I left Pittsburgh with no regrets whatsoever about my treatment decision (I hope I still feel this way 3 years from now). 

Having an AN has been a difficult process, but at this point, I can see that its also forced me to undergo a powerful transformation, and in some ways that has been a good thing.  I wasn't stress free before my diagnosis, I just filled that space with other things to worry about, like where my career and finances would be in five years, or how I stacked up against peers.  Having an AN diagnosis has really lifted the veil on how silly this perspective was.  Now I'm spending more time being in the moment, appreciating every day life, and having compassion for others.  I'm taking better care of my body and my well-being because I appreciate life and my body more.  I know there are going to be tough days ahead, but in many ways, my life has become more meaningful, and its all thanks to a clump of schwann cells (that is hopefully dying as I type this). 

Please message me if you'd like more detailed about my experience.  If helpful to others I can post my progress as I have my follow up MRIs. 

11/2/2013- I posted a one month follow up in replies
12/18/2013- posted a three month follow up in replies
3/27/2014- posted my six month follow up in replies

arizonajack:
Congratulations on your completion of GK. Now you get to spend the next many years monitoring the progress of demise of your tumor.  ;)

Like all of us GK participants, all we can do is assume that the GK was successful but we don't know for sure until we get to see the periodic MRIs.

I'm 9 months out from my GK and had my first post GK MRI August 1 and got to see the necrosis that we all learn to know and love. Many of our members are several years post GK and have seen the shrinkage of their tumors, something we all aspire to for our own stowaways.

Anyway, you have good reason to be optimistic and the following article will give you an idea of how tumors of various sizes progress over a period of years.

http://www.jaypeejournals.com/eJournals/ShowText.aspx?ID=1214&Type=FREE&TYP=TOP&IN=_eJournals/images/JPLOGO.gif&IID=105&isPDF=NO

The article says the following about GK:

"The current technique of using gamma knife radiosurgery to treat vestibular schwannoma offers a high rate of successful treatment and patient satisfaction with a short treatment time, no need for convalescence and a low risk of complications. The current gamma knife radiosurgery technique involves the use of magnetic resonance imaging (MRI) for targeting, the application of a low marginal dose (usually between 12 and 13 Gy) and highly conformal treatment planning using multiple small isocenters. The level of conformal treatment planning and the precision of the treatment is enhanced using the model C, Leksell gamma knife with APS (automatic positioning system) or with the Perfexion fully robotic version, allowing the use of dynamic shaping and hybrid shots (Figs 1 and 2). This technique achieves an average tumor control rate of 95%, facial nerve function preservation in up to 99% of cases and usually between 70 and 80% chance of preserving serviceable hearing."

robinb:
Hi Adam-

I was thinking about you and so glad to see your detailed post about your experience. So happy it was nice and easy for you and I hope you have continued smooth sailing.

Since I posted my details, I found that its so helpful to others to see a positive treatment as so much of what is on this site is from people that have less than great outcomes and long term life changing complications. So if you have the time, I am sure others will benefit from seeing it.

My only regret is that I didn't get a pastrami sandwich from Primanti!

Nank:
I'm so glad you had such a great experience!  I love your descriptions, especially the sandwich!

Good luck to all of us in the future and to killing those ANs!!!

ASG:

--- Quote from: arizonajack on September 23, 2013, 12:42:36 am ---
Anyway, you have good reason to be optimistic and the following article will give you an idea of how tumors of various sizes progress over a period of years.

[/i]

--- End quote ---

Wow, thanks so much for sending me the link to that article.  I never knew what shrinking ANs looked like and always had a hard time visualizing it.  The pictures in the article are amazing, its like Gamma Knife porn or something.  I really hope that I have a similar story in 10 years!

Robin and Nank- thanks so much for the well wishes.  I will be sure to post updates- especially my follow up MRIs.  I'm actually thinking about driving back out to Pittsburgh for my 6 month follow up.  Dr. Lunsford runs the MRI himself and knows just what to pull up, so once you're out of the MRI he gives you the straight scoop and you can talk about it in person.  Its a 4.5 hour drive each way but I'm not sure I have the patience to have my MRI here, read the tech report, snail mail the CD to UPMC, and then anxiously await the phone call.  Plus I'd get a second crack at a delicious primanti sandwich.

You know, while I'm at it, why don't I issue my other food recommendations for the UPMC area?  If the local restaurant scene weighs heavily on your treatment decision (always good to have your priorities straight), this post is for you.

Breakfast: Pamela's Diner.  There's a few throughout Pittsburgh including one just a few blocks from UPMC.  Very decent breakfast and they are known for their crepe-style hotcakes.  I ordered them and they are nice thin pancakes with crispy edges.  My wife and I ate here twice.

Lunch: The Porch.  After your 11am pre-GK appt. with Dr. Lunsford, what better way to pass the time then to walk down Forbes avenue towards the Carnegie Museum (which is very cool and a nice distraction).  Along the way you'll pass the Pitt Cathedral of Learning (tallest building in Western PA) and a nice lunch spot called The Porch.  Good salads and light sandwiches and a nice outdoor seating areas.  You order at the counter so its fast. 

Dinner:  Legume.  This is the number 2 ranked restaurant on Yelp.  Its about a mile from UPMC so a bit of a hike but totally worth it.  Its high end, and expensive, but not snobby.  Very extensive wine list and the food was incredible!  The perfect place to go the night before GK to give your AN its last meal and toast its demise!

This is your AN travel and restaurant guide signing off!

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