Author Topic: I Have a GK Date  (Read 7760 times)

Vivian B.

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I Have a GK Date
« on: May 05, 2010, 06:18:45 pm »
Hello to my AN friends,

I got my results today. My tumour grew altogether from 1.9 cm to 2.1 cm. Although not a great growth, it is growing. The Neurosurgeon expects another 1mm growth in 6 months. I have decided to have the gammanknife treatment and the date is on June 9/2010. I was provided with a video to view of the procedure and a complete explanation of how the day should turn out. There is no mesh mask which I am glad as I am claustrophobic but of course there is the head frame. Anyway I am not sure how I feel, little glad, little anxious. I don't know if I can concentrate at work until that date. How do I put this out of my mind and go on until that day when it is such a big deal! Anyway I welcome any thoughts you have on how to deal day to day during the waiting time.

Thanks.

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

leapyrtwins

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Re: I Have a GK Date
« Reply #1 on: May 05, 2010, 09:27:23 pm »
Vivian -

sorry to hear your AN is growing, but glad you've made a treatment decision; never an easy task.

I think the mesh mask is used for CyberKnife, which is why you don't get one for Gamma Knife. 

I added your procedure to the AN Calendar so we can all remember to wish you well before your big day.

Best,

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

sgerrard

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Re: I Have a GK Date
« Reply #2 on: May 06, 2010, 08:36:46 am »
Wow, Vivian, that is big news. I guess this is what you are waiting for when you watch and wait.

I think it will go great. By some accounts, it amounts to a long morning, and a few days sitting around taking aspirin. Not that big a deal, in fact.

I think you will find a sense of relief starts to grow in the coming weeks, as you realize that you have resolved the situation and found a good plan for action. Your work is done; you can just go on autopilot until it is over with.

So congratulations! Have a good month of May, and best wishes for June 9th.

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.

patt

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Re: I Have a GK Date
« Reply #3 on: May 06, 2010, 12:59:25 pm »
Vivian ---

I am happy for you that you were able to make a decision --- how hard was that!!!!   I am going thru the same thing right now.   I was diagnosed 2 months ago with a 2.7cm AN.   I have been to many Dr for information and my head is swimming.   The hardest part is to try to make that right decision.   I have hearing loss in my Left ear since I was a child.  My AN is in my Right ear --- makes things difficult.

I DON'T WANT TO LOSE MY HEARING!!!   I was told my tumor is too big for CK, but I could do GK.    My other option is Fractionated Stereotactic Radiation  --  5 days a week for about  5 weeks.   They say that would be easier on the healthy tissue around the tumor.

Please keep sharing you info and the best luck to you.   No one knows what we are going thru until you go thru this yourself.

Take care --- Patt from Minnesota
Patt  - age 63
Diagnosed - 3/22/2010  -- sudden hearing loss Rt ear
Right ear -- 2.7cm
Left ear -- limited hearing
Will be having "FSR" 
Starting date is June 1st, 2010
30 treatments  --  6 sites
July 12, 2010 -- Completed "FSR" treatments
Oct 2010 - MRI -Slight decrease in size

Jim Scott

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Re: I Have a GK Date
« Reply #4 on: May 06, 2010, 03:09:00 pm »
Vivian ~

I guess the wait is over.  Of course I'm sorry to learn about your tumor's growth but I'm pleased to see that you made a treatment decision.  I believe the GK treatment is relatively easy.  Putting it out of your mind is a self-discipline exercise and I don't have any sagacious advice except to keep busy and don't allow fears about the 'unknown' to rattle you too much. I'm sure you'll do well and many people will be thinking of and praying for you between now and the completion of your GK treatment on June 9th.  Try to remain, like me, realistically optimistic.    

Jim
« Last Edit: May 06, 2010, 04:19:59 pm by Jim Scott »
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.

Vivian B.

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Re: I Have a GK Date
« Reply #5 on: May 06, 2010, 04:19:16 pm »
Thank you all for your good wishes. Always good to hear from everybody. It makes things much easier.

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

GM

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Re: I Have a GK Date
« Reply #6 on: May 06, 2010, 05:33:55 pm »
Don't sweat the headframe...no big deal.  They made me groggy (drugs...yeah!), and then I was awake and presto...it was there.  I walked around with it on and my wife took pics.  There were other paitents with head frames on too, I felt like I was part of a wierd fraternity  LOL...  but..seriously, don't sweat it.
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

Lizard

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Re: I Have a GK Date
« Reply #7 on: May 06, 2010, 07:33:33 pm »
Vivian,
This is a big moment for you, moving from W&W to scheduling surgery. Although it is hard to get the news that your tumor is growing, you have made your decision and have your date.  As Jan said that can be a really tough decision.  Perhaps you need to let yourself soak it in for a bit, then hopefully you will be able to concentrate at work?  Take some time for yourself, go to lunch with a good friend, do what you love most, and spend time to absorb.  You should feel good, this is your gut telling you to do what you think is the best for you in your current circumstance.

Go with the flow enjoy the next month and try not to dwell, you are in good hands : )

Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

nanramone

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Re: I Have a GK Date
« Reply #8 on: May 06, 2010, 10:08:26 pm »
Hi Vivian - I have an appointment for Gamma Knife on 5-18. You asked how people cope during the waiting period...

Once I made the decision and appointment, I really backed off daily reading about the AN and went back to my normal routine. For the last several weeks, I've been very busy painting sets for a community theater play which opens tomorrow night - being with people I like, staying busy and productive and doing what I love helped me to take my mind off of this problem and feel optimistic about life in general. Though I was quite dizzy while doing the work (lots of climbing ladders, bending, stooping, etc.), I did notice that by staying busy, my mood improved and I stopped worrying.

I am leaving for NYC on 5-11 to visit my daughter for a few days before we both head to Pittsburgh to address this AN issue.

I hope you can find some peace during this difficult time.

Nancy

Jackie

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Re: I Have a GK Date
« Reply #9 on: May 07, 2010, 12:40:32 am »
Hello Vivian,

I am happy for you also that you have come to the decision to have treatment, which is what everyone says is the hardest part of the journey. Now it is time to allow yourself freedom. Freedom from worry and freedom from all of the stresses of life, and to bask in the comfort of knowing your journey is now heading in a different direction. You have done your research, you've asked all the right questions, now get busy with life and enjoy it knowing that your move forward is the right one for you. May the time go swiftly by, and this An journey become a distant memory.

Blessings from
Jackie in oregon
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

mk

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Re: I Have a GK Date
« Reply #10 on: May 07, 2010, 10:09:29 am »
Hi Vivian,

sorry about the growth news, but at least now the uncertainty is over. The bugger probably doesn't intend to stop growing, so it is better to deal with it now rather than later.
Like others have said, it is not as terrible as it seems. Be prepared for a long day for sure, but the procedure itself is not so bad. One more tip. As you know I had GK at the same centre. Have you asked who will be the doctor treating you? Don't assume that is will be the same doctors that did the consultations, because they have scheduled rotations, and it depends who is on duty that day. If you really want your doctor to handle your case ask specifically what dates he is in charge. All the doctors are good and competent, but I want to warn you so that you won't get a nasty surprise of meeting a doctor that you have never seen before on your treatment day.

Other than that, I would say try to keep your mind occupied with other things, so that you won't constantly think about it. Remember that with GK you don't see any results right away, so by the time you are done with GK, you really won't feel much difference anyway.

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.

Vivian B.

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Re: I Have a GK Date
« Reply #11 on: May 07, 2010, 12:08:34 pm »
Thank you everybody for all your support. I just got a call from Toronto Western saying that my treatment has been moved up to June 30/2010  as they had to take an emergency situation. I figure everything happens for a reason. I will post my new date.

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

yardtick

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Re: I Have a GK Date
« Reply #12 on: May 07, 2010, 01:25:43 pm »
Vivian,

Hang in there.  I have had dates moved for non AN procedures and it can be frustrating, but as Marianna said all the doctors are very good and competent.  You will have been a comfort for all of on this forum Vivian and we are all here for you. 

This Sunday is Mother's Day, now is my big order to you and all the Mother's out there me included.  ENJOY YOUR DAY!!! 

Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

opp2

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Re: I Have a GK Date
« Reply #13 on: May 07, 2010, 08:51:50 pm »
Congrats Vivian. I've been corresponding with our friend from BC and he had his MRI today, but doesn't know the results. I'm glad you decided your treatment, and just slightly jealous that I can't have radiation. How silly is that? I'm waiting patiently for head cracking day.

In the meantime Anne Marie is right, Mother's Day is coming up, and the weather is supposed to be really nice next week. I'm going to plant some annuals this year, though I've traditionally stuck to perennials, and the grass is incredibly long with the rain.

The ANAC Toronto chapter is having their 6th anniversary May 25th, right after the long holiday weekend. Then the summer will be on us in no time. There will tons of stuff to occupy your (and my) mind.

It will be done before you know it and you'll wonder where the time went. I'm very pleased for you. I liked Dr. Rutka and the folks there an awful lot when I met them. I really felt comfortable there. You'll be in great hands. Perhaps you and I and Marianna and Anne Marie can do lattes' some afternoon too...
Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

yardtick

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Re: I Have a GK Date
« Reply #14 on: May 08, 2010, 10:58:39 am »
Sounds like a plan Nikki......
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games