Author Topic: My Gamma Knife experience at UPMC (up to 3 year follow-up in comments)  (Read 20451 times)

ASG

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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
« Last Edit: July 03, 2016, 08:29:55 pm by ASG »
2.9 x 2.6 AN left side
GK 9/20/13 w/ Dr. Lunsford @ UPMC

June, 2015: 2.1 x 1.2

arizonajack

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Re: My Gamma Knife experience at UPMC
« Reply #1 on: September 23, 2013, 12:42:36 am »
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."
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

robinb

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Re: My Gamma Knife experience at UPMC
« Reply #2 on: September 23, 2013, 08:32:16 am »
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!

AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

Nank

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Re: My Gamma Knife experience at UPMC
« Reply #3 on: September 23, 2013, 12:51:47 pm »
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!!!

1.3x0.7 cm AN in right ear
Diagnosed 6/12/13
Tinnitus, ear pain
No hearing loss
GK 7/25/13

ASG

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Re: My Gamma Knife experience at UPMC
« Reply #4 on: September 23, 2013, 07:40:27 pm »

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]

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!
2.9 x 2.6 AN left side
GK 9/20/13 w/ Dr. Lunsford @ UPMC

June, 2015: 2.1 x 1.2

mesafinn

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Re: My Gamma Knife experience at UPMC
« Reply #5 on: September 25, 2013, 01:40:07 pm »
Adam,

It was a treat to read your thorough review.  I was thinking of you on your GK day.

Having had GK w/Dr. Lunsford on 4/19/13, it was a deja vu experience to read through your detailed report.   You even brought be back to Pamela's where I enjoyed a post-GK breakfast the next day.

I'm glad you feel good about your decision.  Five months later I still do, too, and I'm looking forward to my upcoming MRI to see the progression of Dr. L's work.  I'm not going to make the trek back to Pittsburgh to do so, and in a way that's regrettable so I can't explore your further restaurant options!

Keep doing well!

Patrick
Oct 2012:  Constant Pulsatile Tinnitus
Feb 28, 2013: Dx AN 1.4 cm X .9 mm
April 19, 2013:  GK at UPMC w/Dr. Lunsford

Some things in my life need to matter less, and other things in my life need to matter more.  So yes, I'm taking this as a "lesson learned experience."

robinb

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Re: My Gamma Knife experience at UPMC
« Reply #6 on: September 25, 2013, 05:19:54 pm »
Adam-

At least I hit 2 out of 3 on your list; Pamela's and Legume, agree with your reviews.

However, nothing good enough to have me trek back to Pittsburgh!!

So glad you are doing well!
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

TwoOceans

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Re: My Gamma Knife experience at UPMC
« Reply #7 on: September 30, 2013, 09:44:44 am »
I, too have just returned from my GK procedure at UPMC with Dr. Lunsford and agree with your comments about the experience.

ASG

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Re: My Gamma Knife experience at UPMC (w/ one month follow up)
« Reply #8 on: November 02, 2013, 08:46:54 pm »
Hey everyone, just thought I would provide an update on how things are going one month after my Gamma Knife treatment.

Symptoms-wise, I feel really great.  I had some nausea and fatigue for three days after the procedure, but it wasn't a big deal.  Since then I’ve felt good and have been exercising, going to work, etc.  The intensity of my AN symptoms- mild hearing loss, mild tinnitus, have remained the same.  What has changed tremendously is the amount of stress and anxiety I experience in reaction to AN symptoms.   In the time between when I was diagnosed and treated, every time I felt a change in my AN symptoms, such as facial tingling in a new spot, I would feel a wave of anxiety accompanied by perseverative thoughts about my AN and possible catastrophic outcomes.  Now when I notice an AN symptom, it’s just in the background in a neutral way.  It’s been great to feel more like my old self.  I really, really hope the GK is ultimately successful because this has been great.

On another, less positive note, I met with a geneticist last Thursday to determine if I might have NF2 due to the fact that I’m on the younger side (31).   The geneticist said that most likely my AN is a spontaneous occurrence and not NF2.  The rationale is that even though I’m 31, if I had NF2 (either generalized or mosaic) other features should have cropped up by now (notably bilateral ANs).  Unfortunately, as many posters on this board have noted, this fact does not rule out the possibility that I may have mosaic or even generalized NF2.  The geneticist’s best estimate is a 10% chance of NF2.  Therefore I decided to get my blood tested to see if I have the generalized type of NF2.  Even if it comes back negative, there is still the possibility I have the mosaic type, but I wanted the testing to get a better sense of how vigilantly to monitor my symptoms in the future, and most importantly, the likelihood I’ve passed it on to my daughter.

The idea that I may have passed an NF2 gene onto my 19 month old daughter has been very difficult to think about.  If the test comes back positive, and I have generalized NF2, it means there’s a 50% chance I passed it on to her.  If it comes back negative, I could still have the mosaic type, which means a lower chance I’ve passed it on (but if I did pass on the gene, she would have it in 100% of her cells).  My daughter is so beautiful and sweet and I would just be heartbroken and destroyed if this happened to her. 

I don’t find out the results of the test for 6 weeks.  If it comes back positive, we obviously test my daughter, and probably my siblings, right away.  If it comes back negative, I will talk with the doctor about whether it’s worth it to test her.  At the very least, the doctor said we should watch her carefully between the ages of 10-15 years, and make her pediatricians aware (perform more frequent audiograms, etc.)

So overall, some highs and lows.  I’ll provide a 2 month post-GK update when I get the results. 

Thanks for listening!
2.9 x 2.6 AN left side
GK 9/20/13 w/ Dr. Lunsford @ UPMC

June, 2015: 2.1 x 1.2

robinb

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Re: My Gamma Knife experience at UPMC (one month follow-up in comments)
« Reply #9 on: November 03, 2013, 10:10:29 am »
Hi Adam-

Glad to see you are continuing to do well.

Will think positive thoughts for your daughter.
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

sarahinPA

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Re: My Gamma Knife experience at UPMC (one month follow-up in comments)
« Reply #10 on: November 08, 2013, 09:05:07 am »
Adam,

I just read through your posts, and its such a wonderful story! I am so happy to hear your positive thoughts!! I also had Gamma Knife at UPMC in 2009, but at that time, I worked with Dr. Kondziolka, who was in the same team as Dr Lunsford; but has moved on to NY. I had almost an exact same experience as you the day of the procedure (except I didnt get to oversee the doctors inthe war room and now i'm kinda bummed about that!)   But I also was very young when I found my AN at 25 years old!

I live in the Pittsburgh Area, so we didnt get to "enjoy the sights" as you did, as we get to enjoy them all the time, and your post made me hungry for a Primanti's sandwich! Theres one 3 minutes from my house, I may have to enjoy it for lunch today ;)

I had an amazing experience with UPMC and the GK team! I am sure that your outcome in the years to come will be nothing but great, and that disgusting tumor will begin to die away!!!!!

I did unfortunatly have regrowth about 2 years post op :( which we all know is VERY UNLIKELY!!!!!  only a 2% chance; but as my luck and life would have it.. there I was again, dealing with the dreaded news all over again in 2011. 

I underwent removal of the disgusting tumor, which at that time I named "monster" on July 29, 2011 at UPMC and again I couldnt say more better things about my doctors (now, Dr. Paul Gardner) the staff, and my experience.

I again fell into some weird percentages with my recovery, but am not 2 1/2 years post SURGERY and I feel AMAZING!!!!

sure im deaf on one side, i get some head aches and i have some discomfort where the screws are, but I thank God every day for the amazing team of doctors I have had on my side at UPMC; my support of my family, and the support I had from this site and the amazing people here!


I pray and wish you the best of luck with your recovery, and know that you made the right decision with GK and UPMC; it really is the best decision in my opinion if it is an option!!!

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.

mesafinn

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Re: My Gamma Knife experience at UPMC (one month follow-up in comments)
« Reply #11 on: November 08, 2013, 04:59:47 pm »
Sarah,

As a UPMC alum, all you have been through terrifies me.  But your optimism, belief, and positive spirit gives me hope and encouragement!  Thank you!!

P.
Oct 2012:  Constant Pulsatile Tinnitus
Feb 28, 2013: Dx AN 1.4 cm X .9 mm
April 19, 2013:  GK at UPMC w/Dr. Lunsford

Some things in my life need to matter less, and other things in my life need to matter more.  So yes, I'm taking this as a "lesson learned experience."

sarahinPA

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Re: My Gamma Knife experience at UPMC (one month follow-up in comments)
« Reply #12 on: November 10, 2013, 06:45:15 pm »
My journey was defiantly challenging, but, I promise you that if I could do it all over again, I wouldnt change anything. My experiences at UPMC were great!! The troubles that I had were due to my body's reaction, and nothing to do with the care or the procedures performed at UPMC.

I know that my experience could be alarming to you, but I shared it because I believe that I had the best care available to me, and I think that you made the right decision with your doctors.

Stay positive and keep a good attitude and everything will work out great!!! I believe that we are faced with these types of challenges in part of a bigger plan that someone up above has for us; and I know that my experience has taught me lessons and gave me strength that I never would have gotten anywhere else.


Good luck and God Bless!
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.

ASG

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Re: My Gamma Knife experience at UPMC (one month follow-up in comments)
« Reply #13 on: November 10, 2013, 08:58:59 pm »
Thanks for the well wishes Robin and Sarah!

Sarah, don't worry, your story definitely doesn't freak me out.  In a strange way, you actually validate a lot of the reasons I had for choosing Gamma Knife over surgery.  Just like you were saying, I believe the most likely outcome is that the GK works, and the second most likely outcome is that it doesn't control the tumor, but the surgery ends up being fine.  I'd place you in that second category since it sounds like you are happy and living the life you want to be living.  I also chatted with Dr. Gardner at one point when I was weighing options and he sounded like a nice guys.  Glad you had a great experience with him.

Just out of curiosity, did you get any sense at your 6 month and 12 month follow-ups that the GK wasn't working?

I also gave my AN a nickname a while back: "'Cousty".  For me, it didn't feel helpful to think of my AN as an alien or malicious invader.  Instead, I like thinking of my AN as a part of my body that means well enough but is a bit clumsy and gets in the way sometimes.  Its kind of like 'Cousty and I are living in a buddy cop movie.  I'm the straight-laced veteran and 'Cousty is the bumbling side kick with a heart of gold. 

'Cousty: "Time to make some more schwann cells for Adam!"
Me: "'Cousty you idiot this is too many schwann cells!!!" *rolls eyes*
'Cousty: "Awww man I knew I shouldn't have taken that nap!"

Hard to stay mad at the guy when I think of it that way.  Don't get me wrong I still hope he fries in hell.
2.9 x 2.6 AN left side
GK 9/20/13 w/ Dr. Lunsford @ UPMC

June, 2015: 2.1 x 1.2

sarahinPA

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Re: My Gamma Knife experience at UPMC (one month follow-up in comments)
« Reply #14 on: November 12, 2013, 03:00:41 pm »
My follow up scans after gamma Knife showed positive progress!! I went back every 6 months, and I think I was at the point of getting them once a year when I began to have increased symptoms of the facial spasms.

I had my first spasm during an intense laugh session with my then sister in law.. we were laughing like children when my face started to do this weird thing...I passed it off as a symptom from the tumor and didnt think much of it until it happened again, this time during a crying episode.

So, It was only happening when I was using extremem muscles in my face, again, I left it go for a few months, and then I started to notice it happening more frequently, like when I smiled or laughed just a little bit. Then it became even more frequent, where it was happening multiple times per day, sometimes even out of the blue.

When i first notived it, I did have an MRI scan done, and the doctors thought maybe it was from swelling, and they wanted to watch and wait...we did that, and I asked for a sooner than later scan due to the increase in the spasms. This is what i called "monster face" because it was a full paralysis of my right side.

When Dr. Kondzoilka gave me the report that the tumor was growing back, he was also shocked; explaining to me that in the thousands of GK procedures they had done, I was the 11th person he had seen have regrowth, and with my age and health, he was surprised.

So, he was headed to a conference that evening, and wanted to discuss my case with his other brilliantly&  intelligent doctor friends.. which is what he did, and with his knowledge and their opinion, he thought it best i have the thing removed, which is when he referred me to Dr. Gardner.
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.

 


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