I'm going with my gut and have made a decision!

[chloes mema]

Jim

What you described sounds like what they told me at the CK center.  They showed me a "mock mask" and also the original mesh before molding.  Also, showed me how the mask is secured to the table for CK.  Sounds like a little valium may be in order in my future.   

Karen

[PaulW]

When I had my mask made it was a piece of cake.. it was warm not hot, and too about one minute.
My CT scan was done 24 hours before CK and my MRI was done 2 weeks earlier.
Because your AN grows so slowly and the amount of growth is typically immeasurable in short time frames.
so having your scans done a few weeks earlier is no big deal.
Treatment planning also takes a full day, which happens before your treatment

[chloes mema]

PaulW

Why I'm concerned about all this timing is because my AN grew 3mm in 5 months so I want to make sure the doctors have an almost up to the minute "view" of this thing. 

I woke up about 4:30AM this morning feel very anxious and having second thoughts about this whole CK drama.  I want to do nothing but obviously that isn't a good option under the circumstances.  I'm wondering now if I should switch doctors AGAIN and try to go with Dr. Chang at Stanford versus local doctors.

I guess you can second guess yourself to the grave. 

Karen

[Tumbleweed]

Hi, Karen:

Sorry I didn't see the latest updates to this thread til now. Here's my experience:

I had my CT scan taken the day before I was treated. The fitting of the mask took only minutes and was very easy to deal with. My AN had also grown at an alarming rate leading up to my treatment, so I was glad that the CT scan and planning happened just one day before treatment.

As for the snotty treatment you've received from staff, I can only say that that would likely not happen at Stanford. I've been very impressed with how friendly, efficient and knowledgeable virtually everyone on staff at Stanford have been. (The one exception was a reading radiologist there, a Dr. Scott Atlas, who consistently made huge errors in my MRI reports. But Dr. Chang never relies on those reports; he makes his own measurements from the MRIs.)

Bottom line: If you're not comfortable with the staff at your local facility, get treated somewhere else! One caveat: It's normal to have doubts about getting treated, right up until you climb onto the table. I was scared and doubtful right til the end, but I had an incredibly successful treatment. So don't wait until you feel totally cozy with the idea of getting CK to actually schedule it; that day might never come, but it's not prescient of looming doom, it's just natural fear taking over. Choosing a team you're comfortable with is another matter, however. You have to also consider who you want to deal with for years after treatment, for your followup appointments. This should be as easy as possible for you; you've been through enough already!

Best wishes,
TW

[chloes mema]

Went to the CK center Monday because the oncologist's nurse said they had all my dates for me etc.  Got to the CK center only to find out that I have to have the mask made, the CT & MRI done BEFORE the doctors can / will even look at a date.

Well, I lost it!  I told the lady at the reception desk that I was not venting about her but I was venting to her.  She got the facility manager & the three of us had a long talk.  Come to find out neither of them care for or think much of the oncologist's nurse either & the manager told me unless I need a prescription filled DO NOT call the nurse, call the CK center.

So.... this Friday I'm having the mask made, they said should only take 10 minutes.  So is this mask making a need for Valium?  I figured I'll try it with out & if need be I'll pop a pill & try it again.  I brought up the fact that I should probably wear no make up & the manager said that would be a good idea since the process is wet & warm. 

Then next Tuesday I go for my CT & MRI with contrast.  Now, that I know is a "Valium moment"!   

Also, Monday I have an appointment with the neurotologist so I guess it's too late to back out now.   

I guess the ball is really rolling & probably no stopping it now.  I think I'm back in that mind set of just get 'er done!!!!

Two questions:
1.  Is the mask making a valium moment?  (I know I already asked that)
2.  Should I have some one home with me the week end following CK procedure? 

Karen

[PaulW]

Hi Karen,
The mask making for me was very simple, like about one minute.. maybe less.
It was warm and slightly moist, and not wet.. About as dramatic as getting a hot towel on your face...I think the hot towel could be worse, and I have had hotter hot towels, and had them on my face for longer too.

I did not require any physical support when I got home. However all my symptoms I had pre treatment did get worse after treatment.
The symptoms were annoying more than problematic. Driving required more care, especially at night, and I can understand why some would feel uncomfortable driving.
My wife is a stay at home mum, so having my wife and family around was very nice and they provided a lot of moral support.
Having someone at home was definitely nice, but not essential for me.

I have my own business, I went back to work a few days after Cyberknife because I got bored at home, not because I had to go, however I cant say I was all that effective. The wonky head feeling definitely slowed me down.

21 months post Cyberknife, and I feel great

 

[chloes mema]

Paul

Good things to hear! 

I kind of figure the mask making won't be any worse than a facial or a massage.  Not real concerned about that.  (at least I'm trying not to be)   

My husband does a lot of volunteer work with hospice and will be away for three days so I was thinking I should schedule my CK procedures around his being home but if the after affects aren't much worse than what I have now maybe that won't be necessary.   

Glad to hear from someone who had a successful and easy time of CK.

Karen

[Tumbleweed]

Karen:

I too found the mask-fitting to be a breeze. Really no big deal. And I say this in the context of being a bit claustrophobic in the MRI tunnel. There's really no comparison. I think you'll probably breeze right through the mask-fitting.

I recommend you err on the side of caution and have someone home with you after you have CK. I was a wreck afterwards. I had an unusually strong reaction. However, that was because the tumor didn't like the radiation. It died very quickly (very widespread necrosis throughout the tumor at only 5 months post-CK) and, after first swelling, shrank dramatically. The rough ride was totally worth the end result.

Anyway, my point is that some people breeze right through CK and suffer no after effects but others -- like me -- get hit with extreme fatigue and possibly increased dizziness and other side effects. Have someone at home with you just to be on the safe side.

Best wishes,
TW

[chloes mema]

TW

Thanks for the insight.  I was thinking along those same lines - I'm not expecting any side effects but if there are I don't want to be home alone.  Most of my friends have said not to be home alone and they haven't had CK.  It just makes sense to have someone here.

Even though you had a rough go of it, it's good to read a success story. 

Needless to say, I'm very nervous about this and am trying to back out at every turn.  If there is any chance I think I can get out of this I'm trying to take it but I know that's stupid because something needs to be done. 

Karen

[chloes mema]

Had my mask made today.  Piece of cake!

Woke up about 3AM, laid in bed until 6AM stressing over it.

Finally, went out to breakfast, then to the gym, then sat in the sauna, and THEN went for the mask making. 

While I was laying on the table waiting for the mask to dry I kept thinking it's just like scuba diving, remember to breathe...

Certainly looks funny.

Thanks all for your reassurances on this part of my journey; if the rest goes half as easily I'll be a happy camper.

Karen

[Tumbleweed]

Karen:

Dunno if I already directed you toward this thread or not, but if not, I think you'll find it contains useful info:
http://anausa.org/smf/index.php?topic=6910.0

Best wishes,
TW

[chloes mema]

TW

Thanks so much.  No I had not read that before but it came at a perfect time since I've been working on my "questions for the doctor" for tomorrow's appointment and this thread gave me more questions to ask.  I told my friend and husband this morning that I have about 25 questions that I want answered tomorrow and I'm NOT going to let this doctor blow me off like he did last December when I saw him.  It's my brain so I want decent answers or I'll go some where else that is if I'm not beyond the point of no return which I think I am. 

I thought I was doing fine but I can tell I'm getting very anxious and this is only for seeing the neurotologist tomorrow.  Tuesday I have my CT & MRI for mapping.

Do you know, do they put the mask on me for the CT scan?  Or do they just use the mask some how during the mapping?

Karen

[PaulW]

Radiashun to my Brane never dun me no harm

The CT scan and the MRI are done without the mask.
The mask is only used for the treatment.

The CT scan is used to build a 3D model of the boney structure of your skull.
The MRI creates a 3D Model of the tumour.
In the treatment planning they merge the two 3D models into one.
They will also plot out organs at risk like the cochlear and the brain stem, to make sure the radiation dose to those areas are minimised.

During treatment, the Cyberknife takes 3D xrays and adjusts the robot to match the CT Scans.
While Cyberknife does not have a Headframe, the CT Scan and boney structures of the skull, are the "Head Frame".
Because many small AN's are encapsulated inside the boney Internal Auditory Canal, its also makes Cyberknife very accurate in the treatment of small AN's.

[chloes mema]

Had my CT and MRI for mapping done today.

CT was done with the mask on which was an enlightening experience.  Now I know I will have to have drugs to make it through the CK procedure.  CT lasted about 5 minutes which was about all I could take.  Also, came out of there with such a sore neck and upper back I guess from nerves and maybe odd positioning.

I'm feeling very down / depressed tonight.  Hopefully it's from the Valium but I've not had this reaction before.  Guess it's finally reality setting in.   

Anyway moving right along.

Karen  

[Suu]

Hi Karen

I hope you're feeling a lot better by the time you read this.  It's a process.  That's it, just another process.

Next time you're on your back can they put a little foam 'cushion' under your knees to take the stress off your back?  I have one under mine whenever I have any sort of procedure that requires me to be flat.

Lovenhugs to you,
Suu xxoo