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Author Topic: Cyberknife Panic Button?  (Read 5572 times)

clr

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Cyberknife Panic Button?
« on: October 08, 2009, 11:41:50 am »
First, thanks to all for helping us through this!! You have all been so wonderful and we can't thank you enough!!

Betsy and I went to her appointment on Monday for the cat scan, mri, and mask fitting for her cyberknife treatments. Her treatments will be 10/19, 10/21, and 10/23. 

I have a few concerns that I didn't even think of when we met with her doctors. In fact, I didn't think of these at all, my sister did!! So here they are:  While you are getting your treatments, is there a "panic" button she can press if she can't take having her head strapped to the table? What happens if she does move ever so slightly? Could the beams hit her brain, nerves, etc? If she does move, and everything gets thrown off, will it just readjust itself?  Do they sedate you?

She had the mask on for 6 minutes of her MRI.  She came out and her chin was beet red and said the mask was really tight on her chin.  Now, the redness was for having the mask on for only 6 minutes. I am worried that she won't be able to take that tightness for an hour and she starts fidgeting.

I guess that's it. 
Thanks!!!!
Cindy (& Betsy)

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I do not have an AN, my 23 yo daughter does. Her username here is Bets.
4.6cm x 3.6cm x 4.4cm  UPMC Retrosigmoid 12/29/2009, 01/19/2009, 06/22/2009 
CK Oct 2009, Dr. Hirsch
SSD before & after surgery
After 3 surgeries, some facial paralysis, but will come back

Sue

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Re: Cyberknife Panic Button?
« Reply #1 on: October 08, 2009, 11:58:12 am »
In most cases, CK and GK patients are given meds to keep them from doing just that - freaking out once radiation is being beamed into their head.  I had a nice little pill that did the job quite nicely.  Of course, I had GK and that was my experience.  I'm sure some CK patients will chime in.  If they are willing to relax a person for an MRI, then it certainly should be so for a CK.

Sue in Vancouver USA
« Last Edit: October 08, 2009, 12:00:55 pm by Sue »
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Sue in Vancouver, USA
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Jim Scott

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Re: Cyberknife Panic Button?
« Reply #2 on: October 08, 2009, 04:12:08 pm »
Cindy ~

Although I had FSR and not CyberKnife, I can relate to these questions, which are perfectly legitimate.  I had to wear the 'mask' (that resembles a fencing mask) for about 30-40 minutes a day for 26 days of FSR treatments.  The fitting took over an hour and 2 tries with 2 different masks.  It fit tightly but didn't rub and, fortunately, I'm not claustrophobic.  Because the mask was literally bolted to the table I was stretched out on, no head movement was really possible.  The attendants said this was on purpose, for safety reasons, to avoid having the beam hit anything it shouldn't hit.  The price for that is some mild discomfort.  I don't recall having a 'panic button' to push but I would definitely ask about it before the procedure.  Betsy can likely have the mask re-sized a bit for more comfort (tell the staff immediately - don't wait) but eventually, Betsy will simply have to endure whatever discomfort the tight mask may bring, although medication may help alleviate her discomfort quite a bit.  I wish her well.

Jim
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sgerrard

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Re: Cyberknife Panic Button?
« Reply #3 on: October 08, 2009, 07:40:06 pm »
One of the good things about the Cyberknife machine is that it monitors your head movement during treatment. If you fidget, it will instantly shut off the beam and stop moving. The operator will then come on the speaker and say "hey, you moved." It happened to me on the second day.

At Stanford the operator was listening to me through a microphone and watching through a window the whole time. If you have to sneeze or something, you can raise your hand. Obviously they discourage that, because they have to reset the machine and so on. But there is never any danger of an errant beam hitting something it shouldn't.

The mask does have a tendency to leave an imprint, but it doesn't last long. I do suggest keeping your eyes closed; the appearance of the machine up close can startle you.

Best wishes for treatment day.  ;)

Steve
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NE Farmwife

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Re: Cyberknife Panic Button?
« Reply #4 on: October 08, 2009, 09:32:23 pm »
I had CK treatment at Stanford.  They didn't offer me any medication to help me relax but I am sure that if I wanted it, I could have had some.  I found that after I laid there on the table a few minutes the mask didn't loosen but I felt like my face relaxed just a little so that the mask wasn't so tight.  They will play some soft music for you also.  I think the point is to just lay there as relaxed as possible.  It will be over soon.  With CK, it is only three treatments.  I thought it was kind of interesting listening to where the arm of the machine was moving around to.  That kept me somewhat occupied.  I mostly kept my eyes shut, but would occasionally peek to see where the machine was. There wasn't a button to push if you needed something.  I think they told me to move my hand if I needed something.  Two technicians were sitting outside the room watching on several computer screens to make sure everything was alright.
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clr

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Re: Cyberknife Panic Button?
« Reply #5 on: October 09, 2009, 04:53:20 am »
Thank you everyone!! We feel alot more comfortable, relieved, now! Thank goodness!

Cindy & Betsy
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I do not have an AN, my 23 yo daughter does. Her username here is Bets.
4.6cm x 3.6cm x 4.4cm  UPMC Retrosigmoid 12/29/2009, 01/19/2009, 06/22/2009 
CK Oct 2009, Dr. Hirsch
SSD before & after surgery
After 3 surgeries, some facial paralysis, but will come back

goinbatty

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Re: Cyberknife Panic Button?
« Reply #6 on: October 16, 2009, 10:00:33 pm »
I can only speak from my experience and the one bit of advice I can offer is to keep her eyes closed.  I'm not claustrophobic but the one time I opened my eyes, the "eye" was right over my head and for whatever reason my adrenaline kicked in a bit. Other than that, the music helped a lot to keep my mind off of it. 
Sandra
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3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
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4/2010 - 10 x 7 x 6 mm; stable/no change
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ppearl214

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Re: Cyberknife Panic Button?
« Reply #7 on: October 19, 2009, 05:30:51 am »
Quote from: goinbatty on October 16, 2009, 10:00:33 pm
I can only speak from my experience and the one bit of advice I can offer is to keep her eyes closed.  I'm not claustrophobic but the one time I opened my eyes, the "eye" was right over my head and for whatever reason my adrenaline kicked in a bit. Other than that, the music helped a lot to keep my mind off of it. 
Sandra

Cindy and Betsy,

Wellness wishes to Bets as she starts treatments today.  Like Sandra noted, keep an eye for the 'eye', enjoy the music, hang in there and you're going to do just fine!  :)

Phyl
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Tumbleweed

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Re: Cyberknife Panic Button?
« Reply #8 on: October 20, 2009, 01:00:25 am »
Sorry I'm late to this post; I just now noticed it. I would only add this: request the Ativan (anti-anxiety med) half an hour before treatment. Although it's supposed to kick in within a few minutes, I found it took longer than that. I also agree it's probably best to keep your eyes closed during treatment; I didn't, and I definitely got a little panicky when "the Eye" moved to a position in front of my face. This was especially the case during my 2nd treatment because I already had Decadron (a steroid) in my system from the previous day's treatment. Decadron makes me feel very anxious.

I hope the treatments are going easily for you.

Best wishes,
TW
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clr

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Re: Cyberknife Panic Button?
« Reply #9 on: October 20, 2009, 12:48:23 pm »
Hello Everyone!

Betsy had her first treatment and you would have never known it!

She did have some zanex and she took a few before it started. She did say the arm hanging right there in front of her face freaked her out. Then, she was asleep and didn't wake up until the technician woke her up.

We went to lunch and stopped at the mall on our way home!

Thanks to all of you for helping us through this journey!!
Cindy & Betsy

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I do not have an AN, my 23 yo daughter does. Her username here is Bets.
4.6cm x 3.6cm x 4.4cm  UPMC Retrosigmoid 12/29/2009, 01/19/2009, 06/22/2009 
CK Oct 2009, Dr. Hirsch
SSD before & after surgery
After 3 surgeries, some facial paralysis, but will come back

ppearl214

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Re: Cyberknife Panic Button?
« Reply #10 on: October 20, 2009, 12:56:15 pm »
cindy and Bets...

 :)  :)  :)  :)  :)

Now, Bets... it's ok to go ahead and peek at the "eye" so you'll know what we are talking about! :)

I'm thrilled to hear that the first treatment went well.  Shopping and lunch post-radio sounds awfully familiar and glad day 1 is now behind you all.

I agree about the "happy pills"...  after day 2, found I didn't need them... now that the "fear of the uknown" became known :)

Continued wellness wishes.
Phyl
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b91221b

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Re: Cyberknife Panic Button?
« Reply #11 on: October 24, 2009, 06:43:07 pm »
I just completed my 3 days of CK...there was no "panic button" for me to use, however, the tech who was absolutely wonderful advised me that if I would just raise my hand, she would see me on the closed circuit TV and come in the room.  I was told that if I moved slightly, the robot would recalculate my movement.  I found that I couldn't actually move except to swallow.  My treatments lasted 40 minutes.  I have a bad back, so I was given a thin gel pad under my back that helped somewhat, however the tech had to be careful that it didn't throw off the angle of my head. All in all, I'm just glad the treatments are over, and am anticipating a good report at the next MRI.  BTW, I'm thrilled to have found this website...sometimes you just want to talk to someone who "knows".  Thanks!
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Barbara
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