Author Topic: My GK adventure begins....  (Read 7560 times)

cathyroe

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My GK adventure begins....
« on: July 23, 2014, 02:03:36 pm »
Hello my forum friends,
Thanks to all of you, I have been able to navigate these turbulent waters and finally come to a decision. My watch and wait has come to an end and postie toastie-hood is on the horizon. Next week. July 29.

After coast to coast (literally) perusal, I finally am going with GK at UPMC with the very well known and respected Dr. Lunsford. After all the searching, my trust landed on him and his team and I have no doubt about my decision.

Thanks to Adam, Robin, Kat and others who have gone this path before me, I feel prepared and informed and incredibly hopeful. But it never hurts to ask your friends to hold you in the light, right? I'd like to think of you thinking of me when I am in that tube (or whatever it is) and for the rest of my days, I will hold others in the light when I know their zap date. Sounds like a good plan.

I just read the book The Divine Matrix, and now I know why and how the prayers and good wishes of others actually does help. Wow, what a journey we are on. Scouring for every tid bit of information, every health food recipe (Adam, thanks for the tip about the bee pollen ) every little touch of support. When this is all over, I think coming out the other end will have a profound revelation of some kind. Even if it's curing my allergies because I became gluten free for one of my tumor shrinkage efforts. No shrinkage, but it seems to have cured my spring allergies.

I will keep the GK adventure post going, and if you are new to the forum I'll try to get lots of info to you. I like Adam's info on where to eat in Pittsburgh. ;D. I'll try to find equally as informative treasures to make the trip to Pittsburgh even more interesting!

Until next week,
Cathy
p.s. Just wondering, how long after GK should a person wait to start enjoying wine with dinner again?
« Last Edit: July 24, 2014, 06:48:12 am by cathyroe »
11/02/12  Diagnosed with AN  11mm X 5mm
05/29/13  MRI reports no change, stable
11/20/13  MRI reports 13mm X 7mm X5mm
5/20/14 MRI reports 14mm x 8 mm x 6 mm
7/29/14 GK at UPMC Lunsford. Now a Postie Toastie
1/14/15 Six Month MRI growth. 16mm X 8 mm
11/09/15  16 mm X 9 mm
9/15/16   17 mm x 11 mm x 8

robinb

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Re: My GK adventure begins....
« Reply #1 on: July 23, 2014, 09:54:44 pm »
Hi Cathy-

just saw your post; posted today 7/23; but you say GK next week, 7/19?
Did you already have GK; if yes, how are you?
If not, when is it so I can send good thoughts your way?

I dont understand tthe question about wine; I never gave it any thought; I have always had a few glasses a week with dinner; never stopped....
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

VTRobert

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Re: My GK adventure begins....
« Reply #2 on: July 24, 2014, 05:54:36 am »
Hi Cathy

I also made the same decision, after the first week with vertigo. Monday July 21, I had my doctors send all my records, and MRI CD to UPMC- DR Lunsford. Waiting to hear back from them! I'm hoping to get it done early August.  I will look forward to hearing your GK adventure, I'm assuming it is the week of 28th, that is when Dr. Lunsford is back in the office.

cathyroe

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Re: My GK adventure begins....
« Reply #3 on: July 24, 2014, 06:46:52 am »
Oops...yes, I meant the 29th.
Robin, the wine question is because I often have wine with dinner and I wonder if that should cease for a while after GK? Since I'm caffeine free, dairy free, wheat free and vegetarian , I usually have little in the way of yumminess factor. Just hoping a glass of Chardonnay could stay... It makes the broccoli and kale dinner infinitely more enjoyable.
11/02/12  Diagnosed with AN  11mm X 5mm
05/29/13  MRI reports no change, stable
11/20/13  MRI reports 13mm X 7mm X5mm
5/20/14 MRI reports 14mm x 8 mm x 6 mm
7/29/14 GK at UPMC Lunsford. Now a Postie Toastie
1/14/15 Six Month MRI growth. 16mm X 8 mm
11/09/15  16 mm X 9 mm
9/15/16   17 mm x 11 mm x 8

jsanders1379

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Re: My GK adventure begins....
« Reply #4 on: July 24, 2014, 10:38:25 am »
I never had any problem with wine-mostly with caffeine or salt-guessing it's things that raise the blood pressure...
Jeanne
Dx 10-25-2012
5x6x4 mm
3-27-2013 MRI 9x6x6 mm
GK  5-7-13 Swedish Hospital, Denver

ASG

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Re: My GK adventure begins....
« Reply #5 on: July 24, 2014, 10:16:53 pm »
Congratulations on making a treatment decision Cathy!  I am confident you're going to have just as great an experience at UPMC as I did. 

And I just remembered a food recommendation I forgot to mention before- Andy's homemade ice cream (I forget where it is but its walking distance to UPMC).  Really good ice cream, especially since you'll be in Pittsburgh in July.

I'm pretty sure I had a cold beer either that night or the next morning.

And please do post how things go afterwards.  Reading about positive/normative post-treatment outcomes had a big impact on me after I was first diagnosed.

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

June, 2015: 2.1 x 1.2

loukan777

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Re: My GK adventure begins....
« Reply #6 on: July 26, 2014, 03:38:37 pm »
My wife (the one with the AN) and I had quite a ride in May and June.  Our initial consult with the ENT and a neurosurgeon of high reputation stated that my wife's AN had to be taken out surgically.  That was traumatic plus, not only to have a 5-inch section of skull to be taken out, but all the post-procedure effects to be left with.  Despite the neurosurgeon warning us that further consults would just confuse us, we took the advice of the ANA site and forums and started sending my wife's medical reports and MRI images from coast to coast literally.  One neurosurgeon personally called me and stated that he would never subject his wife to open surgery if she were the same age and health as my wife, that he would have her go for radiosurgery.  That caused my research to take a 90 degree turn, and through the forums, I discovered the UPMC Dr. Lunsford.  On July 11, my wife went through GK at UPMC and I cannot tell you how relieved we are!  Dr. Lunsford himself coordinated the whole procedure, from leading the 4 doctors who simultaneously attached the head frame, to the team planning for the computerization of the GK, monitoring the GK, removing the head frame, and finally coming in to touch base with my wife prior to her release - 6 hours from start to finish, only 42 minutes in the GK.  She slept off the sedation that afternoon in the motel.  That night and the next day, she had full taste for the first time in years - but that didn't last.  Two days later the old symptoms of facial numbness and lack of ability to taste on the affected side returned.  It seems that the facial numbness is more pronounced, tongue numbness is a new symptom, and the hearing seems somewhat decreased.  My wife has had a couple of headaches in the upper neck and into the head, one pretty ugly - but thanks to the forums showing that fatigue, stress and weather can initiate headaches, and ways to deal with the headaches, we were able to reduce the headaches without narcotics or NSAIDs.  You mentioned prayer, and we believe that the prayers for my wife by people throughout our area and beyond, and by those in the forums, really impacted her frame of mind, the direction for radiosurgery we chose to take, and our decision to go with Dr. Lunsford.  We don't know what the future holds, but we know Who holds the future!  Yes, we are Christians, and our faith is very important to us in our daily lives, including dealing with the AN situation past, present and future.  The best to you, Cathy, on July 29 and I'll be praying for you.
Wife diagnosed with 2.5X2.5X2.4 cm. AN left side 4/2014
left side hearing loss, tinnitus, balance issues, taste issue, facial numbness
GK at UPMC Pittsburgh - Dr. Lunsford - 7/11/2014

terisandler

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Re: My GK adventure begins....
« Reply #7 on: July 28, 2014, 05:45:00 pm »
Good luck tomorrow!  Looking forward to reading all about it.  And one of these days perhaps even discussing over lunch.  Last time I drove to Chicago area I ended up heading toward 80 at the South Bend exit on 30 and went too far, thinking I might actually find 94...I probably would have but my GPS kept shouting at me....  :)
3/25/13- dx 18x11x14 mm AN, hearing loss in right ear x 5+ years, 5 sessions of CK completed May 2013, now a "post toastie".  Follow up MRI 4/14/14 - 15x19x11 mm. Stable with some signs of necrosis.
 Yippee!

cathyroe

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Re: My GK adventure begins....
« Reply #8 on: July 31, 2014, 08:02:03 am »
Greetings my forum friends, I am here as a new member of the postie toasties. So far... pretty painless.
My GK story, UPMC, Lunsford :

Sunday, July 27- Drove to Pittsburgh and checked in to the Hilton Garden Inn which is a short walk from UPMC Gamma Knife dept. About a 7 minute walk.

Monday, July 28- Appointment at 11:00
Met with Dr. Lunsford's doc in training, named Rich. He gave me the usual neurological exam. Walk on your heels, walk on your toes, close your eyes and extend your arms and then touch your nose with your finger, follow my finger with your eyes, asked me a few questions and then left. 10 minutes later he returned with Dr. Lunsford and his nurse Lana. I must say, when Lunsford enters a room, you can feel he has a great presence. He is like medical royalty. Right away he declares that the goal is to arrest the growth and UMCP has a 98% success rate, they will make every effort to save my hearing but there is on guarantee on that, and that there is less than 1% chance of damaging the facial nerve. Any questions?

Yes, I had questions. What about steroids? He gave me a prescription and said that if I ever have a sudden drop in hearing or imbalance in the months to come, I should fill it.
What about facial spasms? He said they are rare, to call if that happens but it's rare so don't worry about it. That was it and he swept out of the room with the same swiftness that he used to sweep in. He seems incredibly busy, and I'm sure he is. Lana stayed behind and had me sign paperwork, showed me my MRI and explained the location and size of the tumor.

I was then sent to meet my nurse, Mark. He explained everything that would happen the following day.  I was sent for blood work (for the MRI since there is contrast) and a hearing test and was out by 4:00. Basically, it could of all happened in an hour. A lot of waiting room time.

Tuesday, July 29
Reported to the UPMC Gamma Knife waiting room at 5:45 a.m and was surprised by the crowd. Nurse Mark came and got me, he said there were 5 people scheduled for Gamma Knife that morning and two of them were acoustic neuromas. I was surprised they didn't give me a "gown" just told me to wear sweat pants and a t shirt which I wore the whole time. He gave me a pill he said was like a valium and then hooked up an IV to my arm. After a few minutes he showed me the head frame, which is more like a head "cage" than the "halo" I expected. He explained that I would go to get an MRI with the head frame on. Weird.... that was a surprise. Then the happy juice went in the IV and I was "in and out", remember very little.  The MRI was relaxing and quiet, then I dozed through the next hour while Dr. Lunsford and his team came up with the plan of action. Mark came in and said "your turn" and off we went to the Gamma Knife room, where it was very quiet and peaceful. I slept through most of it. Next thing you know, my husband was walking me out of the hospital ( Mark offered a wheel chair but I said I could walk) and we went back to the hotel where I just slept the rest of the day. It was really so ..... uneventful, painless, and fast. We were back a the hotel by 11:00 a.m.

It was a long drive home yesterday, seven hours. It seemed long because I was still so drowsy from the medication (happy juice) but wanted to stay awake to keep my husband company on the drive. A bit queasy from the meds, too.

Today is Thursday and I feel exactly the same as I did before I went, except minus the anxiety of anticipating going to Pitt for GK. Same tinnitus, same full feeling in the ear, same energy level (kind of low but okay), no headache at all. The pin holes where they screw in the head frame are tiny. I don't even notice them unless I touch them, and then they are just a tiny bit sore. I will just rest today.

Tomorrow I plan to go back to my usual workouts at the gym, attend to my usual work, resume my life and have a normal, happy life! That's my plan. I'll keep you posted

Cathy
11/02/12  Diagnosed with AN  11mm X 5mm
05/29/13  MRI reports no change, stable
11/20/13  MRI reports 13mm X 7mm X5mm
5/20/14 MRI reports 14mm x 8 mm x 6 mm
7/29/14 GK at UPMC Lunsford. Now a Postie Toastie
1/14/15 Six Month MRI growth. 16mm X 8 mm
11/09/15  16 mm X 9 mm
9/15/16   17 mm x 11 mm x 8

terisandler

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Re: My GK adventure begins....
« Reply #9 on: July 31, 2014, 03:54:24 pm »
I'm glad all went well     ;D
3/25/13- dx 18x11x14 mm AN, hearing loss in right ear x 5+ years, 5 sessions of CK completed May 2013, now a "post toastie".  Follow up MRI 4/14/14 - 15x19x11 mm. Stable with some signs of necrosis.
 Yippee!

MG

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Re: My GK adventure begins....
« Reply #10 on: August 01, 2014, 07:11:52 am »
Thank you Cathy. You really gave a good account of your Gamma Knife experience. I am glad that it all went well for you.

Take care, MG
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

robinb

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Re: My GK adventure begins....
« Reply #11 on: August 03, 2014, 10:02:56 am »
Hi Cathy-

So happy to see your post and that it went well for you; I knew it would.

I went back to my normal hectic life right after, as you know, I had some facial spasms, but been fine for almost a year.

Here's to your uneventful post GK life!

Best,
Robin
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

swhite

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Re: My GK adventure begins....
« Reply #12 on: August 04, 2014, 06:40:00 pm »
Thanks Cathy for posting.  You have no idea how much more I'm at ease.  I'm heading to UPMC next Monday, August 11th for GK.  I'm finding myself a little more than anxious, but now I know what to expect.  I think I'll just need to ask for a little more happy juice than normal.  Since my emergency AN surgery five years ago (it hemorraged), I get way more nervous in any medical situation. 
I'm hoping GK works for you and thanks again!
Sandy
Retrosigmoid 8/27/09 undiagnosed and suddenly; no symptoms prior; approx. 4cmx2cmx2cm; right-side, facial paralysis/weakness, SSD and tinnitus. Baha surgery 11/9/10.
Gamma Knife 8/11/14 at UPMC w/Dr. Lunsford after regrowth detected June 2014

cathyroe

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Re: My GK adventure begins....
« Reply #13 on: August 19, 2014, 04:23:25 pm »
Well my friends, I am just checking in with my 3 weeks post GK report. Nothing new. I feel just the same as the day I went for GK, except much better having the decision behind me. Same tinnitus, same wonky-one-day-not-the-next, same full feeling when it rains.
I feel pretty good, really. I have not missed a day of working out in the past two weeks. I took one week off after the GK and just slept, which was necessary because the drugs they gave me for the head frame made me sleepy for days. But, all is well so far! I am holding the vision that the little bugger is just going to die and shrivel up and I am going to be fine! I AM fine. So for anyone looking for positive news, here it is! So far so good!
11/02/12  Diagnosed with AN  11mm X 5mm
05/29/13  MRI reports no change, stable
11/20/13  MRI reports 13mm X 7mm X5mm
5/20/14 MRI reports 14mm x 8 mm x 6 mm
7/29/14 GK at UPMC Lunsford. Now a Postie Toastie
1/14/15 Six Month MRI growth. 16mm X 8 mm
11/09/15  16 mm X 9 mm
9/15/16   17 mm x 11 mm x 8

MG

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Re: My GK adventure begins....
« Reply #14 on: August 22, 2014, 07:47:28 am »
Good for you Cathyroe! :) Happy to hear all is well so far. Keep us posted.

Take care, MG
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016