ANA Discussion Forum
AN Community => AN Community => Topic started by: MaryBKAriz on May 08, 2008, 04:09:57 pm
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I am so glad to be scheduled. The big days are June 2, 3 and 4! I am having it done at Barrow Neurological Institute in Phoenix with Doctors Daspit/Kresl. I feel excited, it seems strange to say, but I am looking forward to having it behind me. I have tremendous respect for the AN experienced doctors and facility. I feel so blessed top live here where I had all the choices within 40 miles.
I am most comfortable with the decision. The only thing I dread is claustrophobia from the mask. I have been given a prescription, I have made calming CDs for them to play while the CK is being done. I will wear comfy clothes, any other suggestions out there??
Take care all!
Mary ;D
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Plan on where you are going for lunch each day after treatment! :)
Mary, congrats on reaching your decision. It should absolutely feel like you have a monkey off your back! I know, for me... oince I made my decision, I just wanted to get it done and overwith..... To me, the hardest part of this decision making process is... actually making the decision. Now that you have done so, will wash the piratitude socks for our dear wenchMary..... don't forget to add the treatment to the AN treatment calendar so we can track it, ok?
Congrats, Congrats!
Phyl
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Mary -
congratulations on your decision. You sound so thrilled! I'm thrilled for you!
Sorry no suggestions on how to cope with the mask - I had surgery - but I am wondering, are you going to post your mask pictures ala Steve and Phyl ???
Jan
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Ta-Da!
I wouldn't describe the mask as claustrophobic, at least not the same way an MRI machine is to some people. It is more like someone holding your head very still. If you don't try to move your head, you don't really notice it. It seemed pretty easy to me to keep still, since something is holding your head, so you don't have to try very hard. ;)
Congratulations on your decision, do put it on the calendar, and take care in the mean time.
Steve
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Mary -
I do have some advice for you - I just thought of it.
I've never had CK or a CK mask, but when I did my MRIs I had a mask of sorts.
My solution was to close my eyes and think good thoughts to distract myself and make me forget about where I was. At one point, I was on the beach in Hawaii, at another I was at a Jimmy Buffett concert - I'm sure you get the picture.
Hope this helps,
Jan
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Hi all,
Thanks, Jan. :) Such a good idea. When I got my MRI, I was designing a new way to make MRIs more user-friendly other than the obvious - MORE ROOM - I assume the size is the way it is due to the technology or someone's perverted mind (like the mammogram inventor). Anyway, as an artist, I tried to really get into it. I figured sounds of waves and sea gulls, the smell of the ocean and a soft breeze. being piped in. Then a painting done ala Tromp loi with a lot of perspective and soothing colors of a cottage beach sitting a top rocky cliffs, overlooking the ocean. As you go through the MRI you watch a sunset. When the sun is set, you are done. But that was all dashed during one of the breaks between when I asked the guy to bring me out for a moment and he wouldn't until I insisted. By then it escalated my phobia.
Gosh it is stupid. People without that fear are lucky. My friend here keeps saying it is no big deal. I agree with that on the intellectual level...but emotionally I don't listen. I started thinking for those that don't get it, if you are afraid of snakes or tarantulas, imagine letting them crawl on you for an hour. I am not afraid of either, so I would be okay with that. When I was young I had a pet snake.
Hi Steve, maybe it isn't called claustrophobia since you can see out. :) It is an intense fear of really tight spaces, getting stuck in them. The mask is tight and I will be stuck in it. I don't know if that makes sense, but there it is.
I am absolutely confident I am making the right choice for me with the CK. I love the doctors, and the facility, both have the AN specialty and have done hundreds and hundreds of them for people all over the world. I am thrilled with the statistics for success, my Dr. only having 2 out of 500 ANs growing afterwards. Both of those were larger than mine. Facial nerve conservation is good as well as hearing. I can go out to lunch afterwards. So why am I like this???
I KNOW I will get through it. I will wear pirate socks...where do you find those, anyway, Pirates-or-Us? I am not a wimp about very many things. I hate I am a wimp about this.
Thank you for letting me vent. For those of you who are facing REAL things to be scared of and dealing with real serious issues, I know I am lucky and I do appreciate it. I think that is what makes me even madder at me. I might try to find a quick course in meditation.
Mary
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Mary, I'm feelin' that monkey off your back! :) Good for you and the piratitude socks.... Check with Captn Deb re: which national chain stores sells 'em... she'll know :)
Phyl
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Oh I forgot, I will have hubby take photos and will find one to post. Something fun to look forward to. ;)
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Oh I forgot, I will have hubby take photos and will find one to post. Something fun to look forward to. ;)
kewl... so, what color is the "fishnets" going to be? Steve got blue... I got sickly white (as if I'm not already sickly white!).... I say purple.... whatta think? :) I want them piccies!!!!!
Again, congrats!
Phyl
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Do I have a choice of colors???? That WOULD be kewl! I wish I couls take it home and paint it first! ;D
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Hi, Mary:
Congratulations on your decision and the date being set, a relief and something to (sort of) look forward to.
I had FSR which is short duration (about 20 minutes) but every day, five days a week - for five weeks, in my case The 'mask' was extremely snug. As Steve mentioned, you cannot move your head (for good reason) so you don't even try. Of course, about two minutes after the mask was secured, I usually had an urge to itch my face - but couldn't. I learned patience and how to distract myself. I'm one of the lucky folks who isn't claustrophobic. So, by simply thinking of other things, like what I was going to have for dinner, the time went fairly quickly. I almost fell asleep during a few sessions. The reality is that this has to be done and it isn't so awful, really, So, you get through it somehow. I know you'll find a way.
I wish you a very successful CyberKnife treatment. Please know that many positive thoughts and prayers will be with you on June 2nd, 3rd and 4th. :)
Jim
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Mary,
Congrats on your decision/date! Here's a pic of me in my mask, with the CK warming up overhead. Don't know if it'll make you feel any better though. ???
(http://i253.photobucket.com/albums/hh53/jrm5c/ck_photos/mask_small.jpg)
The technician drew purple ears and eyebrows on mine with a Sharpie to help him line it up each day. Pretty weird looking... I think it looks worse from the outside though. You can see through it more than you'd think.
I thought of one other suggestion... watch the drinks (water, coffee, tea, etc.) beforehand. ;)
Good luck,
JB
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Ah, another picture for the contest! Cool 8)
Thanks for posting it, jb. I think you should get extra points for the purple ears and eyebrows - very unique :)
And, Mary, I have to say you aren't a wimp at all. Lots of people have trouble in an enclosed MRI. I find if I open my eyes when I'm inside the tube, I freak out - but if I keep my eyes closed, I'm fine.
I can't believe you had a pet snake as a child. My son has a 4 1/2 ft. corn snake - beautiful snake - but I've told him a million times, the first time it gets loose it's gone (after he catches it, that is). Snakes totally creep me out.
Jan
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Great picture, jb. Sort of a mummy look, I think. Pharaoh JB. ;D
Mary, if it is a problem, I think they can give you a sedative or tranquilizer to make it easier. You would need someone to take you to lunch, though, no driving in that condition. I would call them and see if you can get that arranged. Even if you don't take it, knowing you can may ease the anxiety some.
Meanwhile, you can practice lying on the couch very still for an hour. :D
Steve
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Mary -
Steve is right. I know lots of people - family members included - who have had to take something to calm their nerves in order to have an MRI. You might want to ask about that option.
Jan
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Mary, like others noted, maybe an ativan or low dose valium (2mg) to help "curb the edge" off of MRI's. When I began to have MRI's too long ago, I'd panic, I'd make them pull me out, someone would stand next to the machine and keep their hand near my shoulder and talk to me..... I tried low dose valium and it seemed to help. Since then, MRI machines have changed so much over time...and now, I just sleep through them. Even with 'bang-bang-tick-tick-tick-bang".... Ask them to keep you updated between images.... and have sweet images of the warm islands..... drinks on the beach.... Matthew McConnehey (sp?) slathering sun lotion on you...... hope it helps!
Phyl