Author Topic: CK completed  (Read 4544 times)

goinbatty

  • Sr. Member
  • ****
  • Posts: 288
CK completed
« on: January 12, 2008, 08:55:38 pm »
I completed CK x5 at Georgetown on 1/11/08.  I was very impressed with everyone from the front desk staff to all involved in treatment.  My radiation oncologist is Dr. Gregory Gagnon.  I highly recommend this facility for treatment. 
Treatment sessions lasted about an hour.  The afternoon following the first treatment, I felt a mild stinging feeling in my ear which resolved within a few hours.  Other than that, I felt nothing.  I declined the pretreatment Ativan.  I'll admit that I did fine until I opened my eyes when the robotic arm was right over my head.  The mask didn't make me feel claustrophobic but seeing that machine aimed right at me made me a little uneasy.  Needless to say after that, I kept my eyes closed and did fine. 
We got home last night.  Mind you it's an 8 hr drive so I'm a bit wiped out.  I'm relieved to have it over with.  Now I can only hope for minimal to no side effects, and necrosis.  Only time will tell. 
MRI will be repeated in 2 months.  Will keep you all updated.  Thank you all for your thoughts and prayers. 
Sandra
1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

OMG16

  • Sr. Member
  • ****
  • Posts: 342
Re: CK completed
« Reply #1 on: January 12, 2008, 09:45:41 pm »
I'm very glad to hear that you did well.  I have been thinking of you each day this week.  I will be waiting to hear in 2 months about your MRI.  I have been lurking as a guest for almost 3 years and have read many of your posts.  You are a wonderful person.  Take care 16.  I believe you also deserve a kiss to your forehead.  :-*
I believe you are given choices in life and it is not what has happened to you that defines who you are.  It is how you handle the situation and finding the positive in an almost hopeless situation that counts the most.  My son is my hero and I have had the pleasure of learning this from him.

jb

  • Full Member
  • ***
  • Posts: 136
    • My MRI sequence:
Re: CK completed
« Reply #2 on: January 12, 2008, 11:33:07 pm »
Sandra,
Was wondering how you got along this week.  Thanks for the update.  I know what you mean about catching a close-up glimpse of "Cyclops" in action.  I kept my eyes closed after that too!  Anyway, I'm glad everything went well for you.  Welcome to the other side!
2 cm right-side AN, diagnosed July 2006
Cyberknife at Georgetown Univ. Hospital, Aug 2007
Swelled to 2.5 cm and darkened thru center on latest MRI's, Dec 2007 and Mar 2008
Shrinking! back to 2 cm, Aug 2008
Still shrinking (a little), I think about 1.7 cm now, Aug 2009

Jackie

  • Sr. Member
  • ****
  • Posts: 385
Re: CK completed
« Reply #3 on: January 13, 2008, 12:34:20 pm »
Congratulations to you Sandra!!!

Completing your CK treatment is monumental in my book! I am in the watch and wait mode and am leaning toward CK if and when it is necessary. I am a claustophobic type person, learning that from my MRI's, and I have a question for you! I cannot stand any pressure on my nose! I have to carefully find glasses that don't put pressure on the bridge of the nose. Did the mask you had compress that part of the nose? Just curious????
Again, many many great wishes for a completely successful outcome for you!
Jackie
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

goinbatty

  • Sr. Member
  • ****
  • Posts: 288
Re: CK completed
« Reply #4 on: January 13, 2008, 01:42:50 pm »
Thank you all for cheering me on.  It is a HUGE relief to have that over with. 
Regarding your question about the mask.  Back in Nov when I was fitted, the mask was stretched over my face while warm which to me felt great.  Because the mesh didn't stretch that much at the base of my nose, she pinched it away from my nose/nostrils a bit.  The end result looked pretty funny.  Sort of like a huge pixie nose.  I don't know how else to describe it.  The mask was left in place for maybe 5-10 minutes to harden.  Following that, I went to have the CT scan done at which time the mask was used.  During treatments, the most pressure was across the forehead but it didn't bother me.  If you know you're claustrophobic, my only recommendation would be to just keep your eyes closed and you'll do fine.  I tend to do that during MRIs also.  Also you could take advantage of the anti anxiety med that is offered beforehand. 
Meant to mention that like you, I tend to always get light weight frames because I can't stand pressure on the bridge of my nose either.  Now that I've hit that lovely bifocal stage, I got progressive lenses awhile back.  I finally got to where I can use them but I have to be sitting down.  With the odd feeling that I sometimes get balance wise, I don't trust myself attempting to walk with them on.  Next year, I'm definitely getting straight bifocal lenses. 
1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

mindyandy

  • Hero Member
  • *****
  • Posts: 678
  • Loving Life
Re: CK completed
« Reply #5 on: January 13, 2008, 04:24:28 pm »
Congrats!!!!! I go in the 23rd, 24th and 25th. I hope my experience goes well just like yours.  ;)
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: CK completed
« Reply #6 on: January 13, 2008, 04:29:57 pm »
Hey Sandra, congratulations on being a CK postie! You may get a few temporary symptoms over the next six months, but most likely nothing major.

I also got the pixie nose mask.  :)  I found that while on the table, if I didn't move my head, I couldn't even tell that my head was being held in place. However, at the slightest movement, the mask grabbed me like a vise and wouldn't let my head budge. An odd sensation, but easy to deal with - close your eyes and lie still!

I've been wearing progressive lenses for several years now. They do take getting used to, but I have found that as long the prescription is correct (it is more fussy for progressives), my eyes and brain can sort it out after a week or two, and what I see seems normal again. I'm sure that depends on you and your eyes, though.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

candtlaw

  • Jr. Member
  • **
  • Posts: 78
Re: CK completed
« Reply #7 on: January 14, 2008, 09:43:03 am »
congrats on a smooth treatment  ;D  It does feel good to have it behind ya!

I guess my comment about the mask is def just lie still. I couldnt tell either when I didn't move that it was on. It was if I moved I started to freak. I am a bit claustraphobic........ My anxiety meds helped me. I took a ativan before the fitting and the ct and the treatments...... lol!    oh yes, they sometimes will let you bring in a cd. I took in soothing music at first and then at the end of my first 2-3 treatments I brought some happy upbeat stuff.. It was something to focus on and I just tried to relax and enjoy the not having to do anything time  ;) 

I must say CK became my buddy by the end of treatments... I actually patted him on the head and said goodbyes!   8)
Cyndi
post CK for AN 1cm 04/30/07


Loving my life today :)

jcm

  • New Member
  • *
  • Posts: 16
Re: CK completed
« Reply #8 on: January 17, 2008, 11:37:21 am »
Hi Sandra,

Congratulations and good luck with the CK.  I am new to this site.  I have been posting different
threads along the way.

Can I ask how you came to the decision to go the CK route?  Husband just diagnosed with
AN in left ear. 1 to 1.5 cm and has balance issues and great deal of hearing loss.

Hearing loss seem to happen rapidly.  So far 2 opinions from Dr's.  Watch and wait
and surgery.  Both were surgeons.  So confused why different?  Surgery was recommended
as he is 46 and does not have the concern to preserve hearing since it is pretty much gone.

We have just learned about CK over GK and was wondering your input on this. 

Would love to hear any comments and suggestions you or others might have that could
help my hubby to make the decision that is best for him.

Does anyone know if hearing aids are an option with AN treatments?

Sandra, stay and strong and good luck to you.

Thanks,
JCM's wife

goinbatty

  • Sr. Member
  • ****
  • Posts: 288
Re: CK completed
« Reply #9 on: January 18, 2008, 08:53:09 am »
The main reason I sought treatment when I did was that the tumor had grown in a short period of time from the first MRI to the second.  My hearing wasn't affected that much but I had started to notice mild balance issues.  Initially I wanted to go the surgical route but since my tumor was fairly small and hearing wasn't affected, I chose CK.  Before making that decision, I had multiple consults regarding the different treatment options.  The physicians agreed that with the noted growth, continued watch and wait was probably not the best option for me.  Also, I'll admit that thinking about the tumor and researching treatment had almost become an obsession in a way.  Once I decided on CK, it was like a huge weight was lifted.  Now that it's done, and mind you it's only been a week, I get a little odd feeling occasionally but so far so good. 
My only advise would be to research the different treatment options and get as many consults as it takes to make a decision that you and your husband are comfortable with. 
Regarding your question about hearing aids, I'm not sure about that. 
Good luck and keep us updated.
Sandra

1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7449
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: CK completed
« Reply #10 on: January 24, 2008, 12:32:00 pm »
Sandra,

shame on me!  :'(   I'm late in chiming in my congrats to you for completing CK :) 

So..... did the "eye" give you a wink? ;)

Congrats and welcome to the wonderful world of Postie!

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

goinbatty

  • Sr. Member
  • ****
  • Posts: 288
Re: CK completed
« Reply #11 on: January 27, 2008, 01:49:51 pm »
Actually, that eye kind of freaked me out a few times.  Stupid me opened my eyes when it was directly overhead.  And I still find it kind of funny that it bothered me. 
Everything's fine so far.  Just noticed the tinnitus is louder and I've actually felt something move in there a few times.  I'm guessing that's due to swelling. 
After having waited a year, I can't express how RELIEVED I am to have the treatment over with.  I'm not consumed with it like I was before because what's done it done and only time will tell. 
Thanks to everyone for their words of encouragement. 
Sandra
1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

pearchica

  • Sr. Member
  • ****
  • Posts: 320
  • Hey!
    • Political Chic Chat- an Independent Political Cocktail for Women
Re: CK completed
« Reply #12 on: January 31, 2008, 02:44:42 pm »
goinbatty: I'm like you, I took the Phyl challenge to look in the eye only to be freaked out!  Only warriors like Phyl can handle it! Happy that you made it through- congrats on being on the other side of AN planet- those who are "post treatment"- it's a FABULOUS place to be.  Take care, Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys