Author Topic: Back from GK - doing good  (Read 9365 times)

Joey

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Back from GK - doing good
« on: October 03, 2008, 12:17:21 pm »
Hello everyone again - I had my GK yesterday at Mayo Clinic and I am happy to report I'm doing great so far.  Wed. was a day filled with appointments there, plus a meet and greet with the radiologic people that would all be there, the complete team.  I was nervous the evening before but managed to sock away a nice dinner complete with the chocolate raspberry cake at the Canadian Honker restaurant across from the hospital I'd be approaching at 5:30 am the following morning.  I was awake from about 2:30 on, so no problem getting up on time.  I arrived at the hospital, was taken to the appropriate floor in a timely manner, shown my room and instructed to change into gown and long pants (the radiation oncologist had warned me that sometimes people are given no pants and to be sure and ask (!) for them, "because we neither want nor need to see all of that".)  Anyhow, I was taken then to the GK suite and had two wonderful nurses that helped me through a mini meltdown.  I had been given adavan to calm me, plus something nice in an IV, so I was a bit loopy.  After swabbing my entire head/face with alcohol, Dr Link and a Dr. assisting had my headframe on in about 3 minutes, and both were good about keeping me calm and breathing.  The headframe was not at all as bad as what I built it up to be, funny how that happens.  I was able to move around ok and could use restroom alone even.  I took a Dean Koontz book to keep me busy, but there wasn't much downtime.  It all went fine; I had an MRI and then a CT; then the team took about a half hour for planning before the actual treatment.  The machine looked a bit like an old fashioned hair dryer to be used while you lay down.  After the team helped me gently down and bolted everything into place, they left the room.  I was monitored throughout the 45 minute treatment, which went quickly and I think I slept through some of it.  Strangely, radiation is just the quietest thing.  I only heard sounds briefly as the machine was either moving, or the frame was moving, I'm not really sure which.  At the end of the treatment, chimes sounded, and it reminded me of church bells.  They came and helped me out and sent me back to my room, after doing the big headwrap.  I hung out in my room for about 2 hours until nurse was satisfied I was doing fine.  My husband brought me a gorgeous plant, and I ate the most bland cheese sandwich I have ever had, but let me tell you, I was starving.  I left hospital at 12:45 pm!!  So all is well.  My one pin site is a little sore and oozy in front, the back ones I can't seem to find.  I am kinda tired and dizzy at times, but not bad at all.  I have to say that Mayo is world class in my book, I was treated like a princess from start to finish.  Well, gotta go for now.      Hi yall, Joey
Left sided AN.  GK over and done with at Mayo Clinic on
10-2-08; according to Dr. Link, AN measured 15 mm in greatest posterior fossa diameter; used 11 isocenters of radiation to cover tumor volume of 2.3 cm3.  Follow up on 4-14-09 indicated necrosis, no change in tumor size and less hearing, darn

Jim Scott

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Re: Back from GK - doing good
« Reply #1 on: October 04, 2008, 02:05:30 pm »
Hi, Joey:

Thanks so much for the informative, entertaining post with the news that you've successfully completed your GammaKnife treatment at the Mayo Clinic, a world-famous medical facility.  I'm so pleased to learn how well things went for you and that none of your fears were proven valid.  I trust your recovery will be as quick as it is smooth and complication-free.  :)

Jim 
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

leapyrtwins

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Re: Back from GK - doing good
« Reply #2 on: October 04, 2008, 02:08:01 pm »
Wonderful news, Joey  ;D

Glad everything went well.

Thanks for the update,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

mindyandy

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Re: Back from GK - doing good
« Reply #3 on: October 05, 2008, 12:51:15 pm »
I'm glad to hear that your GK went well..  ;D
Keep us posted on how your feeling in the future.....POSTIE ;)
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

MAlegant

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Re: Back from GK - doing good
« Reply #4 on: October 05, 2008, 02:42:50 pm »
Congratulations Joey, I am wishing you the best.  Keep us posted as you recover.
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

sgerrard

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Re: Back from GK - doing good
« Reply #5 on: October 05, 2008, 05:01:04 pm »
Hi Joey,

Good to hear that everything went well. Sorry about the cheese sandwich.

Now lets hope you have a smooth year ahead, with little or no funny business along the way, and a great result on your next MRI.

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.

ppearl214

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Re: Back from GK - doing good
« Reply #6 on: October 05, 2008, 06:34:30 pm »
Hey Joey and congrats for being a toastie-postie! :) You did it and now, onward and upward to wellness.... Let's get that brain booger dead!

Congrats!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Nancy Drew

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Re: Back from GK - doing good
« Reply #7 on: October 05, 2008, 06:53:08 pm »
Hi Joey,

Thanks so much for your post.  I was supposed to be right behind you with my GK on the 7th, but I have been rescheduled to Oct. 21st.  I appreciate the walk through of your procedure, and I am glad everything went so well.  It is very encouraging, and I am looking forward to walking out of the GK room with success just as good as yours.

Best Wishes,

Nancy ;D ;D ;D
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

Omaschwannoma

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Re: Back from GK - doing good
« Reply #8 on: October 06, 2008, 05:12:12 am »
Nice to see you are doing so well and perhaps your post will help those deciding how best to treat their tumor. 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

hannie

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Re: Back from GK - doing good
« Reply #9 on: October 06, 2008, 06:08:17 am »
Hi Joey,
Its good to hear your treatment went well. Great to know it wasn't as bad you feared either, it gives hope to those of us still deliberating our treatment options!

Wishing you a speedy recovery

Hannie

Joey

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Re: Back from GK - doing good
« Reply #10 on: October 06, 2008, 11:26:13 am »
Thanks everybody for the well wishes, I'm still home and doing fine.  I forgot to tell you that the radiation oncologist told me beforehand that most all the side effects would be related to the headframe/screws/application......  not entirely true, but somewhat.  I sorta feel like I've been sideswiped by the mega flu.  But I'm up and around and made a cake even.  Walked the dogs a little.  But I'm still in jammies mode and plan to have lunch and a nap now!  My stomach seems unaffected by this.  Just don't have the energy I normally have.  Did anyone else notice a persistent numbness in the top of the head?  It still feels like a combination of a Charlie McCarthy doll head - or the top of an end table.  Hello from the couch!!  Joey
Left sided AN.  GK over and done with at Mayo Clinic on
10-2-08; according to Dr. Link, AN measured 15 mm in greatest posterior fossa diameter; used 11 isocenters of radiation to cover tumor volume of 2.3 cm3.  Follow up on 4-14-09 indicated necrosis, no change in tumor size and less hearing, darn

windy

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Re: Back from GK - doing good
« Reply #11 on: October 06, 2008, 04:26:25 pm »
Hi Joey,

I noticed a numbness on the left side of my head.  It was also at the top of my head mainly.  It went away after several weeks.  I now can no longer tell a difference between the left and right side of my head which is good.  Good luck to you in your recovery!  I wish you the best!
* 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

Sue

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Re: Back from GK - doing good
« Reply #12 on: October 06, 2008, 11:52:43 pm »
Hi Joey,

Congrats on getting through GK.  The numbness, as I understand it, is due to the injections that they give you to numb your head before putting on the headframe.  It sort of moves around causing numb spots here and there on your head.  Very weird, but it does eventually go away.  Why it stays around for so long is a mystery to me.  I had a huge dent on one side of my forehead, and I was afraid it was permanent, but that finally went away too, after many weeks.  But then, I'm older, and I suppose my skin doesn't "snap" back like it would have when I was a mere lass. Are you on steroids?  Being tired is very normal.  I felt like I'd been drug through a knothole backwards for awhile.  It will probably take a little while before you feel 100%.  All this has to do with your general physical condition, your age, your level of activity, etc.  But knowing that you have just kicked that darn AN in the keister must  make you feel like "Rocky" about now. 

Cue the Rocky music and run up those steps!  (after your nap ;))

Sue in Vancouver, USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
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mk

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Re: Back from GK - doing good
« Reply #13 on: October 07, 2008, 07:25:04 am »

My left pin site (opposite to the AN) was very sore, right from the beginning. They had to inject more of the numbing stuff to it while they were screwing the frame in, and at the end of treatment it was bleeding quite a bit.
I had some numbness on and off on that side, as well as weird feelings on the bone for a few weeks after. Fortunately it was the opposite side of the AN, so I was positive it was due to the frame and not to some scary radiation effect.
The right side healed right away, whereas the scar on the left stayed for months and it has still not totally disappeared.

The only other minor side effect that I had right after treatment was some swelling on my forehead (barely noticeable), which lasted a few days. I should have read the instructions that they gave me, where they suggested to do cold compresses after treatment.

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.

Joey

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Re: Back from GK - doing good
« Reply #14 on: October 07, 2008, 01:08:51 pm »
  ;)  Hey there.  I have to report that today I am feeling pretty good overall; no flashing weird nerve pain, not quite as fatigued as noticed the last few days.   Before leaving the GK suite, I was given what was referred to as a "special shot of a steroid", at which I must have looked alarmed..... Dr. Link assured me it wouldn't cause the insomnia and other unpleasant side effects, so in my IV it went.  It was supposed to help with potential swelling issues.  Parts of my time during that procedure are now kind of hazy, but I do remember the administration of drugs.   I also remember complaining that the back part of the headframe application was hurting like the devil, so I believe I got an extra shot of Lidocaine.  Today my head feels much the same, numbness wise.  It is an interesting sensation, because I can just touch one spot - and feel a weird current type sensation go through an expanse of skin.  Difficult to explain in its weirdness.  But you all know what I'm talking about, right???   Also, my forehead is behaving like the effects of Botox right now.  Can't quite raise my eyebrows yet, but that's unimportant.   I am thinking maybe tonight a Corona with a wedge of lime to celebrate being slightly closer to normal!  Ha!   Later, Joey
Left sided AN.  GK over and done with at Mayo Clinic on
10-2-08; according to Dr. Link, AN measured 15 mm in greatest posterior fossa diameter; used 11 isocenters of radiation to cover tumor volume of 2.3 cm3.  Follow up on 4-14-09 indicated necrosis, no change in tumor size and less hearing, darn