Author Topic: Back from GK - doing good  (Read 9364 times)

Joey

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Re: Back from GK - doing good
« Reply #15 on: October 07, 2008, 01:17:53 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 ;))

Wow, Rocky!!  Loved that 80's reference, and yes, I am much stronger than I thought....  actually, the ENT I first saw at Mayo encouraged me to be as active as possible, to help with the balance issues, which I think was sound advice.  I am pushing myself to do a little more today, like real clothes maybe.   Do you suppose Sylvester Stallone is single again????  :D 


« Last Edit: October 07, 2008, 01:20:31 pm by 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

Joey

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Re: Back from GK - doing good
« Reply #16 on: October 09, 2008, 09:44:14 am »
 :)  Well, one week ago I was in the GK machine at about this time - and now I am back to work and doing just fine, other than the numbness feeling at the top of my head.  Yesterday I took a decent walk and drove myself into town, just to be sure my reflexes were all good.  And I feel great!!  tumor be gone....... or a bit smaller, at least !  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

MAlegant

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Re: Back from GK - doing good
« Reply #17 on: October 09, 2008, 03:07:57 pm »
Hi Joey,
Sounds like you are doing really well.  Every day, a little better, though sometimes it goes unnoticed.
Best,
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.

hannie

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Re: Back from GK - doing good
« Reply #18 on: October 10, 2008, 07:50:36 am »
hey Joey,

I'm so glad to hear you are doing better this week. You sound really positive too!

Hannie

Sue

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Re: Back from GK - doing good
« Reply #19 on: October 10, 2008, 11:49:14 am »
Hi Joey,

So happy you are feeling better!  Yes, all the weird things that we experience are difficult to describe.  I do think we have to come up with a whole new AN language to explain what we feel, don't you?   We already have Wonky Head, so we're on our way to our own vocabulary. 

Take care,

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!
Poet Lorry-ate of Goode

Nancy Drew

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Re: Back from GK - doing good
« Reply #20 on: October 10, 2008, 02:38:58 pm »
Sue,

I'll have to add AN ear, nonAN ear, ANers, PM, GK, CK and maybe some others I can't remember right now.  When I am talking to my nonAN friends and use these terms, they say whattttttttttttttt?????  What is wonky head?  Is this something I should worry about?   

Joey,

I am glad you are doing well.  I hope to have something positive to add here on Oct. 21st--my big day.  Keep updating.  It helps.

Nancy
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

Joey

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Re: Back from GK - doing good
« Reply #21 on: October 13, 2008, 08:36:37 am »
 ;D  Hey Nancy - Glad to know it helps, sometimes I think I'm a little boring~!   I am glad to be of some use, that's for sure.  Things are really looking a little better every day.  My hearing seems to be hanging in there.  My hearing test the day before GK revealed even more improvement - still from the steriods??  I'm not sure, but I was certainly surprised - I had 100 % "word recognition" in both ears even, with "mixed low level hearing loss in the left ear"  so I am hoping we chose this tumor attack at a good point in time.  I also had a perforated eardrum in that year, from an old ear infection, so they think my hearing is interesting.  I rec'd a copy of the operative report from Mayo, listing how much radiation I received, so I will have to come back and explore things on this site more, as I don't understand the techno-jargon used on it.  Apparently there are different amounts applied to the tumor and then to the tumor margin.  Some days I think there is a definite fullness feeling in that area, but then again, I had that before..... I am thinking positive thoughts and I'll keep checking in!  As my care nurse said, remember - "nothing will be as bad as you think it is"... and I was pleased to tell her later that she was right.  Of course I was on a happy little high from the drugs - and from being done with GK.  I will keep updating so that others remain encouraged, too.  Take care, 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

Nancy Drew

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Re: Back from GK - doing good
« Reply #22 on: October 13, 2008, 12:45:26 pm »
Hey Joey,  Glad to hear that everything is going well so far.  I don't find you boring at all.  I am ready for any news--the good or the not so good.  I just talked to the nurse at the GK center awhile ago, and now it is all seeming real.  A week from tomorrow I will be in happy land.  Keep posting.  Nancy ;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

MaryBKAriz

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Re: Back from GK - doing good
« Reply #23 on: October 17, 2008, 04:01:12 pm »
Hi Joey,

So glad to hear of your progress. I am cheering for you.

Mary 8)


Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

Nancy Drew

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Re: Back from GK - doing good
« Reply #24 on: October 18, 2008, 10:26:15 am »
Hi Joey,

I hope things are still going well with you Joey and all the rest of you.  I am just three days away from GK, and the nerves are kicking in.  Interested in what you GKer and others as well felt a couple of days before treatment.  I can't sleep, my stomach hurts, I can't concentrate, and sometimes I just want to hide so people will just leave me alone.  Is this normal?  I know my AN is small so that is a good thing, but I do have worries about having made the right decision.  I am not backing out, but sometimes I feel like a "chicken".  I am keeping busy, but my mind wanders sometimes.  If nothing else, I am ready to get GK over with just so the anxiety of waiting will go away.  All of you GKers seem to have positive reports with fairly minor issues that seem to get better over time.  Comforting to hear what all of you have to say.  Thanks! 

Nancy :o
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

mk

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Re: Back from GK - doing good
« Reply #25 on: October 18, 2008, 10:48:21 am »
Joey,

I am glad everything is going well for you.

Nancy,

It is normal to feel nervous before treatment, who wouldn't, no matter if it is microsurgery or radiosurgery. Keep focusing on the potential for a positive outcome; all treatment methos nowadays have very high rates of success.

For what it's worth, I was a nervous wreck before treatment, because of all the conflicting last minute opinions ( must have lost 5 pounds the week before because of the stress). The procedure itself was tiring of course, but afterwards I felt fine, and after a nap I had a nice supper at the hotel we were staying and was able to go for a walk. Overall, I would say that it has been a breeze since then, and I didn't have any issues. I have my 6 month follow-up appointment coming up on the 28th, so I am waiting to see what the doctors will have to say.

We will keep cheering for you, and I am sure everything will go well.

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.

sgerrard

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Re: Back from GK - doing good
« Reply #26 on: October 18, 2008, 12:43:54 pm »
Hi Nancy,

it seems normal to me to be nervous before a major medical treatment, and to wonder one last time if it is the right decision for you. Your AN is on the small size, so you will be getting less total radiation than some, and should come through with flying colors. Hang tight, you are almost there.

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.

Nancy Drew

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Re: Back from GK - doing good
« Reply #27 on: October 18, 2008, 02:55:46 pm »
Thanks Steve for the support.  So, it sounds like I won't be "glowing" when I leave the GK center ;D ;D ;D.  It is a beautiful day outside today so I am on my way out to enjoy the sunshine.  Anything to calm the nerves.  Nancy
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

Joey

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Re: Back from GK - doing good
« Reply #28 on: October 20, 2008, 08:16:40 am »
 :)  Nancy Girl:  Hey, wish I was there to give you the send-off hug, but - consider yourself hugged!  You will do just fine, and remember that this will not be nearly as bad as you think.  It will go quickly, then you get a little down time.  Reach inside for peace and calm and strength, rest assured it is there when you need it.  I will be thinking of you and praying for your positive outcome, which by the way, I'll be waiting to hear about.  Take care and bear in mind how good it is we are choosing to take charge of the situation and get this taken care of so we can go about life.  I'll be toasting you on this end.     ~Joey

PS And I'm still doing good.  Ear feels full occasionally and still the buzzing and humming, but not bad overall. 
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

Nancy Drew

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Re: Back from GK - doing good
« Reply #29 on: October 20, 2008, 04:42:00 pm »
Thanks Joey and All,

First of all Joey, I am glad you are doing well.  I am in a good space today.  I have slept good the past couple of nights, and the massage I had today was a wonderful present to my body!  I am feeling very positive and am anticipating an excellent outcome.  The anxiety of waiting is very close to being over, and I am ready for the tumor to be zapped.  May it die in peace!!!  I hope you continue to post Joey.  The updates have been very helpful, and I appreciate any feedback you have to give.  People are here to help us all.  If I don't give an update tomorrow, I will give an update on the 22nd. 

Nancy 
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

 


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