Author Topic: Decided on Cyber Knife treatment  (Read 3643 times)

Sara

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Decided on Cyber Knife treatment
« on: January 12, 2010, 01:09:20 pm »
Hi guys,

I posted in the general forum last month (and year!) regarding the different possible treatments. I was diagnosed back in 2005 and decided to wait. The AN grew (it's about 2.5 cms.) so I had to decide on treatment. After speaking to many doctors, and based on my personal situation, I've decided for Cyber Knife treatment. I met with Dr. Gagnon and Dr. Jean at Georgetown Univ. Hospital on Dec. 30, and I decided they'll be the ones doing the treatment. I'm going in on Thursday for a CT scan and simulation. I imagine the dates for the actual treatment will be set then.

I also had a question: have any of you experienced strong but spasmodic headaches prior to treatment? I'm not sure if it's due to the AN or some sort of sinus problem, but since last week I'm experiencing on/off headaches. They feel like spasms of the brain--it tightens a lot (like someone squeezing the brain like a ball) and then it releases. Sometimes they stop on their own or if not, I take Advil. Then again, they could be stress headaches in anticipation of treatment....

Thanks for all your support!

Sara

Jim Scott

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Re: Decided on Cyber Knife treatment
« Reply #1 on: January 12, 2010, 02:01:46 pm »
Hi, Sara ~

I'm sorry your AN showed growth but pleased to learn you've made the difficult decision as to your treatment, doctor and facility.  I hope your CK goes smoothly with no complications whatsoever.

To answer your question: in the months prior to my AN diagnosis, I experienced - not really 'headaches' - but intermittent 'stabbing' pains at what I later learned was the site of my large (4.5 cm) AN.  They disappeared immediately following my surgery.  I can only speculate that the headaches you've described are a result of your growing AN but of course, I could be wrong. 

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: Decided on Cyber Knife treatment
« Reply #2 on: January 12, 2010, 11:05:59 pm »
Sara -

I don't know the answer to your questions; I had surgery.

I just wanted to say congratulations on making your treatment decision; it's never an easy choice.

Please let us know when you are scheduled for the CK so we can put it on the AN Calender and wish you well prior to your treatment.

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

Sara

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Re: Decided on Cyber Knife treatment
« Reply #3 on: January 13, 2010, 09:18:00 am »
Thanks so much, Jim and Jan!

I will certainly let you know about the schedule when I find out.

Yes, the headache could also be the AN growing. I just hope that it hasn't had a major growth spurt that will make the CK treatment impossible. I guess I will know tomorrow after the CT scan. I'm keeping my fingers crossed!

Sara

Vivian B.

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Re: Decided on Cyber Knife treatment
« Reply #4 on: January 20, 2010, 04:57:46 pm »
Hi Sara,

I have had headaches right on top of my head that feel like the symptoms that you are describing and funny enough, they do go away on their own. Sometimes I take advil or sinus tablets and it gets better. I don't know if it's related but my surgeon told me that if the tumour is not compressing the brain it should not be related. Hard to tell. I am hoping that they will go away after I have gammaknife in the near future. But who's to say? These tumours are so unpredictable.

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

Tumbleweed

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Re: Decided on Cyber Knife treatment
« Reply #5 on: January 25, 2010, 12:32:35 am »
Sara, I personally think you've made an outstanding choice in CK. I had CK 18 months ago and had a wonderful outcome.

(I didn't have the type of headaches you describe.)

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

suz

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Re: Decided on Cyber Knife treatment
« Reply #6 on: January 31, 2010, 11:55:10 am »
Hi Sara,
I know just what you are talking about in relation to the brain spasm/headache. Mine comes with a dizzy feeling more than a headache, but feels like a spasm or contraction of the brain.  My headaches sometimes go away on their own, sometimes I take advil if they are really bad. I am still in the Watch and Wait category, but have had growth of my AN recently and am considering gammaknife (FRST) vs. surgery.....So I can't tell you about what happens afterwards - yet! I do know that when I am tired or dehydrated my symptoms overall are worse.
Keep us posted about your treatment date and how it goes for you.
Suz
Tumor 1.8cms x 1.5 cms x .5 cm;partially removed 7/14/10 by Drs. Friedman & Schwartz of House Ear Clinic in LA. Moderate SS hearing loss.
Re-growth approximate 3 mm per year; GK planned for 12/2017.
Philadelphia, PA area