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Author Topic: Gammaknife here I come  (Read 13368 times)

cindyjarrett

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Re: Gammaknife here I come
« Reply #15 on: October 11, 2012, 06:55:45 pm »
Skip, Karen and Ken,

Thanks a bunch.  I will post once it is over.

Cindy
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Diagnosed 8/9/12 with an on left side
19 mm x 17 mm x 13 mm
tinnitus with high pitch hearing loss
Will have gammaknife at UVA with Dr. Sheehan on 10/12/12
Trusting in God

It is what it is

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Re: Gammaknife here I come
« Reply #16 on: October 11, 2012, 11:30:53 pm »
I'll look forward to reading your updates.  :)

Karen
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.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

MDemisay

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  • Forever Thankful for Supportive ANA Friends!
Re: Gammaknife here I come
« Reply #17 on: October 12, 2012, 09:17:23 am »
Cindy,

My prayers are with you as well,God be with you as you undergo Gamma Knife. Relax it is silent! Meditate to wellness!

Mike
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1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

cindyjarrett

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Re: Gammaknife here I come
« Reply #18 on: October 12, 2012, 06:35:21 pm »
Well gammaknife today was not horrible.  Total time at UVA was 6 hours.  Having the halo put on was easy.  The worst part was the MRI.  My neck seemed to hurt after it was over.  I guess it was how I was laying, the weight of the helmet and frame, and being able to not move at all.  So after that I was dreading having the actual procedure done, but it was okay.  They tucked towels under my neck and made me a little more comfortable during the process.  Having the frame taken off was fine.  It did not give me a headache or make me sick.  They gave me something to drink and eat and said I could go when I felt okay.  I really could not wait to leave and had been looking forward all day to heading to the parking garage.  I tried to visualize while I was having the procedure that God and his angels were killing my tumor.  I was very calm during the whole procedure because I could feel all the prayers from everyone.  I could not have gotten through this whole process without God, whose comfort has been with me during this journey. 

I do not have facebook but my children posted to have all their friends pray for me.  I find it amazing the number of people who responded.  We actually came across two people at UVA who had saw the posts my children had made and had already been praying.  God works in a lot of ways. 

Tomorrow is the first support meeting in Roanoke, VA, where I live.  I hope to be able to attend and help others in the future who are struggling with an AN.  I will keep everyone posted with updates.  Thanks for all your support and prayers.
Logged
Diagnosed 8/9/12 with an on left side
19 mm x 17 mm x 13 mm
tinnitus with high pitch hearing loss
Will have gammaknife at UVA with Dr. Sheehan on 10/12/12
Trusting in God

novagirl

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Re: Gammaknife here I come
« Reply #19 on: October 12, 2012, 10:02:19 pm »
Cindy - thank you for sharing your GK experience. I just had CK at Stanford this past week although am from Northern VA. Congratulations on becoming a toastie-postie and let us pray for successful outcome! God bless!
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Right AN 10 x 10 x 7 mm - dx 7/28/09; w&w for three years
CK at Stanford October 2012 - Dr. Chang and Dr. Soltys
Oct'12: 15 x 14 x 10 mm
Oct'14: 12 x 6 x 5 mm

skipg

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Re: Gammaknife here I come
« Reply #20 on: October 13, 2012, 07:16:49 pm »
Cindy and Novagirl, I am standing with you for a successful outcome. Hopefully the worst is over and the rest is a breeze. Cindy I just met a man from Roanoke who is also having proton therapy, but his treatment is for bladder cancer. Makes me thankful for just having an AN. He is in good spirits and has been given a great prognosis. He is selling his motorhome and buying a condo in Florida.
Skip
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Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

cindyjarrett

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Re: Gammaknife here I come
« Reply #21 on: October 14, 2012, 03:26:52 pm »
Skip and Novagirl,

Keeping you both in my prayers as we travel this journey together.  I feel fine.  Am just a little tired and my head is a little sore.  Keep me updated on how you both are feeling.

Cindy
Logged
Diagnosed 8/9/12 with an on left side
19 mm x 17 mm x 13 mm
tinnitus with high pitch hearing loss
Will have gammaknife at UVA with Dr. Sheehan on 10/12/12
Trusting in God

skipg

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Re: Gammaknife here I come
« Reply #22 on: October 15, 2012, 05:43:40 pm »
Hi Cindy, Thanks for the prayers. I will be updating in the Radiation section in my proton journal, so far so good.
Skip
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Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

It is what it is

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Re: Gammaknife here I come
« Reply #23 on: October 17, 2012, 08:35:24 am »
My prayers and thoughts are with the three of you.

Karen
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.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

lciastko

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Re: Gammaknife here I come
« Reply #24 on: October 23, 2012, 02:45:41 pm »
Hi all, I was waiting for results, had gamma knife in May 2012 at Univ. of Pittsburg. I have a 2.4 tumor. Just had a 5 mos. check up with no growth. They have reported a 98% success rate.  Please look them up! Leslie :)
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cindyjarrett

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Re: Gammaknife here I come
« Reply #25 on: November 01, 2012, 07:20:12 am »
Leslie,

So glad to hear about your checkup and results.  Sounds wonderful and encouraging.  I just had gamma knife at the University of Virginia on October 12.  I go back in April for my six month follow-up.  How are you feeling and have you had any side effects?  I feel really good.

Cindy
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Diagnosed 8/9/12 with an on left side
19 mm x 17 mm x 13 mm
tinnitus with high pitch hearing loss
Will have gammaknife at UVA with Dr. Sheehan on 10/12/12
Trusting in God

cindyjarrett

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Re: Gammaknife here I come
« Reply #26 on: February 14, 2013, 01:47:07 pm »
Well I am now four months after gamma knife.  Last week I began to experience sharp pains around my cheek , ear and head.  I have awoken with what feels like ear infection two different mornings.  The sharp pains are quick and go right away.  I only have them a few times a day.  I decided I would go to my ENT and see if I had ear infection.  He said ear drum looked good but did check me for TMJ.  It did hurt a little on my AN side when he pressed.  This is also the side where I am having all the pain.  He said that I have TMJ.  I am not so sure.  I wonder about trigeminal neuralgia.  This is not unbearable just a little scary.  Anyone else have these symptoms?

Cindy
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Diagnosed 8/9/12 with an on left side
19 mm x 17 mm x 13 mm
tinnitus with high pitch hearing loss
Will have gammaknife at UVA with Dr. Sheehan on 10/12/12
Trusting in God

kmr1969

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Re: Gammaknife here I come
« Reply #27 on: February 14, 2013, 09:08:09 pm »
Cindy,

Nothing to add, but I just saw that you had updated your post and I wanted to say hi.  Sorry to hear that you are having some pain, but I am sure the qualified docs at UVA will make sure you are recovering well.  It is hard to believe that you are only 4 months post GK.  I can remember our posts when we were both still trying to figure out what to do and where to go.  That seems like a lifetime ago.  Hang in there and I hope you get some good news soon.

Ken
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2.7 cm AN diagnosed June 2012
Translab completed November 2012 at House Clinic
SSD; numbness on face and in mouth, plus poor taste buds, but happy with how I am doing so far

maxine

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Re: Gammaknife here I come
« Reply #28 on: February 16, 2013, 09:15:22 pm »
Hi Cindy,
 I had gammaknife almost four months ago also.  Since then I've  been dealing with balance issues and  some minor facial nerve problems (eye tearing, facial twitches and and puffiness above the eyelid on the AN side)  and I've also had occasional jabs of pain between my ear and jaw which might be similar to what you are experiencing. About two months ago I got checked for  what felt like an ear infection but my ear looked perfect so I decided it was just the ear fullness I had when initially diagnosed returning again. Luckily it only lasted a few days this time. I don't know if this is similar to how you feel.

Yesterday I started feeling sharp but fleeting pains in the part of the back of my head that received the radiation. I was actually checking to see if anyone else ever mentioned this when I saw your post.  I tend to think that all of these issues are either the effects of the AN itself or its response to radiation and I try not to worry about them. When I mentioned these issues to my doctor she did say that now was the time when the radiation effects are at their maximum. Hopefully, the issues that we are both having are signs that the tumor is starting to die off.

Best wishes,
Maxine
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cindyjarrett

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Re: Gammaknife here I come
« Reply #29 on: February 17, 2013, 08:13:07 am »
Maxine,

Thanks so much for writing.  It just helps to know that other people may know what is going on with me.  Yesterday I had a really good day with hardly any stabbing pains.  I, too, pray this is a sign that the tumor is going to die.  Keep me updated on how you feel since we probably will be experiencing the same things.

Cindy
Logged
Diagnosed 8/9/12 with an on left side
19 mm x 17 mm x 13 mm
tinnitus with high pitch hearing loss
Will have gammaknife at UVA with Dr. Sheehan on 10/12/12
Trusting in God
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