Author Topic: Time for CK  (Read 1594 times)

sree

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Time for CK
« on: September 02, 2018, 02:47:08 pm »
Hi all
after W&W for 5 years we decided to go for radio surgery.
AN was same size untli my recent MRI. It showed around
2mm growth (9.2mmx 4mm). After doing some research on facilities we
are going with Dr. Tse atKaiser South SfO / Redwood City.
I have appointments scheduled on September 6 & 7th for
consultation with the team, CT, Mask and MRI etc.
Actual CK going to be after a week it seems.
It's going to be a single session.
we asked Dr.Tse that we wanted to go for 3 sessions instead of one
just worried about putting too much radiation once than
splitting it in multiple sessions.
Dr.Tse said to talk to Radiation Oncologist about our concerns.

Please give any inputs or suggestions or tips to get ready for the treatment
and also on 1 vs 3 sessions.
this group helped me a lot with all your experiences and valuable information.
Thanks
Sree


Toasted2018

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Re: Time for CK
« Reply #1 on: September 02, 2018, 05:28:03 pm »
I am new to the forum and had CK in Ottawa in July (5 weeks ago).  My AN was 4.3 x 10.4, left ear, slightly larger than yours.  I was given three sessions, consecutive days at one half hour each.  There was never any suggestion of a single session. I probably would have questioned a single session as well.

I found the entire experience simple and I was without any anxiety or need for medications.  I did not want music or TV as I preferred to watch the machine itself or just rest with my eyes closed.  I got up off the bed easily after each session and had no difficulty walking out, although I had someone there to drive me home just in case.  All in all it was quite uneventful.

After the sessions were done I thought perhaps I had a side effect in that my ears were sore.  Soon enough I realized however that it was simply the compression of the mask against my awkwardly protruding ears for one half hour that made them sore!! Indeed the past 5 weeks have been quite uneventful with regard to any side effects.  I still have partial hearing loss in the left ear and my only other pre-existing condition, which was balance issues, is slowly getting better.  I do vestibular exercises I found off the Net and my balance is actually quite good but not perfect.  All in all I am quite happy with the results although I do know that there could be some side effects in a few months due to delayed reaction from radiation and swelling, but I am optimistic about it.  I have never had tinnitus and I have noticed no diminution of hearing from pre-CK.

Best of luck to you,

Gary

gary.s

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Re: Time for CK
« Reply #2 on: September 02, 2018, 05:39:03 pm »
Hi Sree,

It seems like your tumor is still very small, just curious as to why you have decided to take care of it now. I had Cyber Knife radiation at Barrow Neurological Institute in Phoenix during April of 2018. My radiation oncologist said he would give me five gentle doses, totaling a large cumulative dose. So instead of one massive dose, my radiation was spread over a five day period. I am now over 4 months post CK and doing okay. It is always nice to get another opinion from a neurologist. If you live in the Bay area, some of the best hospitals are located near you, especially Stanford. Best of luck.

Gary
Mild symptoms July 2014
MRI 1/3/2017 rt side AN 1.40 cm x 1.59 cm
MRI 3/5/2018 AN 1.70 cm x 2.07 cm
CK April 16-20, 2018, Barrow Neurological Institute
9/2018 hearing aid Phonak Audeo B and Cros B
MRI 11/30/2018 AN 1.62 cm x 1.83 cm, mild necrosis
MRI 5/16/2019 No change in AN size, necrosis

notaclone13

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Re: Time for CK
« Reply #3 on: September 02, 2018, 09:57:18 pm »
Sree, I have read of a few instances where CK was performed in a single session, but most of the time it is 3 sessions.  It is important to know the total amount of radiation you will be given. If you still have hearing in the affected ear, it is usually about 12 Gys. If you have already lost hearing, they may go a little higher. My doctor mentioned 3 sessions, 4 Gys each for a total of 12 Gys. Did any of your doctors specify how many Gys you will receive?

juliawilson

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Re: Time for CK
« Reply #4 on: September 04, 2018, 12:12:33 pm »
You are asking your neurosurgeon a very valid question about why he is choosing only one CK session. I find it disturbing that he couldn't or wouldn't give you an answer. Have you met with the radiation oncologist? Being Kaiser, my fear would be that one session was chosen because it is less expensive than three.

Do you have the option of getting a second opinion elsewhere? Redwood City is half an hour from Stanford, where CK was pioneered. I had mine done there in 2017 with Dr. Stephen Chang, and his standard procedure is three sessions.

As for CK itself, it's pretty much a walk in a park. It works like this: Lie there with your comfy mask and heated blankets. Listen to music. Have a little rest afterward, probably taking a steroid tablet with a glass of juice. Get up and go to lunch. After my first session, I was stunned that my tinnitus disappeared within hours. (That's unusual.) Otherwise, I felt nothing. However, after the third session, I was bone tired and couldn't wait to take a nap. That hit-the-wall fatigue lasted for a number of weeks--fixed each day with a nap--but gradually it disappeared.

Keep us posted on your journey.

sree

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Re: Time for CK
« Reply #5 on: September 05, 2018, 01:58:10 pm »
thanks for your kind responses
I am going to meet Radiation Oncologist on friday sep 7th
I will ask him about three sessions instead of one and also
how much radiation they are talking about.
After that we will decide.
I know Stanford is another option but I don't think Kaiser
would accept it since they have a facility nearby in San Francisco.
Dr.Tse my Radio surgeon once worked at Stanford , with Dr. Chang and CK.
We've done much research for the best doctor in Kaiser for CK and everyone
suggested Dr.Tse.
we went to him for second opinion and decided to go with him.
Since I don't have any hearing in my AN ear he says to go for single session.
Tumor is still small but I am having these balance issues, spasms around
right cheek. When tumor stayed still we never thought about going for surgery
now it showing growth so decided to go for it.
I will update after my appointment with Radiation Oncologist.
Thanks   

sree

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Re: Time for CK
« Reply #6 on: November 05, 2018, 03:42:55 pm »
Hi all
i keep forgetting to post this update .
I had CK done last month.
It was a single session at Kaiser, SF
Actual treatment was around 35 mins and prep etc took another 15 mins.
Doctor gave me decadron to prevent inflammation. I didn't feel anything during the
treatment. Had a headache afterwords. My head was hurting not around the AN site
but top of the head. I was concerned about this but doctor said it might be because
of the mask. Asked us to come back for MRI after 3 months.
I had this headache for 3 days, took Advil twice a day. It took care of most of the pain.
I was feeling tired for few days, eventually got better.

Thanks for all your support
I will keep posted if there is any update.

notaclone13

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Re: Time for CK
« Reply #7 on: November 07, 2018, 01:05:04 am »
Hi Sree,
Thanks for giving us an update about your treatment. Bet you are relieved to have it behind you. Wishing you a smooth recovery and the best possible outcome. Please let us know how it goes from here on.

sree

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Re: Time for CK
« Reply #8 on: January 12, 2019, 03:56:43 pm »
Hi All
Update on my CK AN journey.
It’s been three months since I had CK. I don’t feel anything different from before. Doing just fine
I had follow up MRI last week. Doctor said there is no change in size or shape of the tumor.
I know three months is too soon to tell anything but I was kind of dissolved to hear about no change.
I was hoping to get some different news.
He said to follow up again in 8 , months which will one year by then.
Thanks
Sree

 


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