Author Topic: Finished CK Yesterday  (Read 2870 times)

ceeceek

  • Full Member
  • ***
  • Posts: 159
Finished CK Yesterday
« on: October 19, 2007, 09:24:52 am »
So,,,I had my final round of CK yesterday.. I had three treatments an hour or so each....only major side effect so far is slightly sore roof of mouth,,,,and bad taste..yuckkkkk...Mario the tech said it is due to my smell sensory nerve being hit,,and for those of you with an AN..will probably not experience it...remember,,I have to be different...lol
ANyway....Overall , I have not had effects of decadron other than no sleep..but I have been insomniac for years..so really no big change...and my ear canal is a little swollen..I know my sinuses are slightly swollen from treatment which pushes on my estachean tube..had same effect after actual surgery and this so far comparatively is no sweat....I am hoping that even three months from now..this is all I will experience other than having the tumor die verses. "long term growth control" after all,,they cut off all most all of the blood supply during surgery in two different manners, it is already partially calcified etc...so am keeping my fingers crossed. I went to the CK center in Palm Beach...everyone was nice..would have liked to know a little bit more of what to expect from proceedure but I think they thought I knew all about it as I have been pariticipartory since Jan.....but no biggie...lie on a table for an hour..not too hard if you know what I mean....no pins,,no needles etc.
For the most part,,I was a little tired here and there,, but am also fighting a cold so it may have nothing to do with the actual CK....
I do beleive I may lose a spot of hair on the back side of my head as I could actually feel it burning me....they had to stop once or twice to give me a little relief..but it is a small spot and if it occurs it should not be permanant, so whatever...my only concern now is what to expect in the next three months..but the Dr stated to me, that what I would feel in three months would be directly related to how I felt now..and so far...overall,,,not too bad and hope this will always be the worst of it....I will keep yall updated to progress,,but so far,,I was worried about the Keppra..no biggie..the decadron..so far so good....minimal effect but afterall..only on it four days....a little tired but may be due to travel and cold...one wierd thing,I actually got a sunburn on my face but figure it is actually better than actual sun damage,,and  I am already tan rather than burned like if I went to the beach.....one heck of a way to get a tan on my face...but remember,,my tumor is a little different than an AN....so, at the moment happy with decision and really glad I went with CK vs Gamma, novalis,,peacock etc.....Dr Spunberg is great,,and his associate is very knowleagable..so feel I have the best chance..thanks for everything
Ceeceek
Such is life...Finally identified...vidian nerve schwanomma, 2.8x2.8x3cm.....in the middle but under my brain.....post transphenoidal endoscopic surgery April 19th, 2007 Pre CK treatment in Sept 07.....re-arranged cavity in hopes of reducing side effects and now officially diagnosed as hard headed.

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7447
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Finished CK Yesterday
« Reply #1 on: October 19, 2007, 12:17:33 pm »
ceeceek... also "peeked" at your post on the CK patient support board ;) and hun.... you rawk! :)  Hang in there! Get some rest (in between those insomnia twinges) and hang tough! I'm soooooooooooooooooo proud of you!!!!!!


xo, blah blah and yada yada ;)  BTW, rumor has it Mrs. S. Pistachio gelato rawks ;)
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

ceeceek

  • Full Member
  • ***
  • Posts: 159
Re: Finished CK Yesterday
« Reply #2 on: October 19, 2007, 05:27:36 pm »
The gelato..is totally excellent.....have you..or do you know of anyone with the wierd taste thing...today is somewhat better..at least coming and going vs constant,,and I understand that this actual week should be the worse of symptoms..although after reading board and seeing people with problems months after I am skeptic but hopefull.....was wondering how long I have to put with taste....
I also asked Dr farkus to stay on  decadron for extra day or so....my ear is a little swollen but remember my tumor is pushing on tube and I have a cold..so anything that pushes on it causes pain etc and the decadron seems to help...he said one more day but then no more...othewise, I feel okay,just nervous about what to expect......later......
Ceecee
Such is life...Finally identified...vidian nerve schwanomma, 2.8x2.8x3cm.....in the middle but under my brain.....post transphenoidal endoscopic surgery April 19th, 2007 Pre CK treatment in Sept 07.....re-arranged cavity in hopes of reducing side effects and now officially diagnosed as hard headed.

jerseygirl

  • Hero Member
  • *****
  • Posts: 801
Re: Finished CK Yesterday
« Reply #3 on: October 20, 2007, 07:28:27 pm »
Congrats, Ceecee! Hope the remainder of your tumor just dies!

         Eve

 
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

ceeceek

  • Full Member
  • ***
  • Posts: 159
Re: Finished CK Yesterday
« Reply #4 on: October 20, 2007, 10:03:37 pm »
Thanks eve..how are you doing? I havent heard from you in ages......I am still hanging in..my eye is aggrevated again,,which we figured woudl happen..not as bad as after surgery..mroe like sinus pressure,,plus I do think I really have a cold to boot so that may be it. Feel a little fuzzyheaded but still functuning etc. so hope this is the worst of it...hands down still easier than before and now I can picture its death...painting my mask into intersting artwork when I can see again...
How bout you? back to full function yet? etc. Give me a buzz,,,and thanks to everyone for the support.
I can see how if I had this initially it would really be a no brainer..no punn intended... but since they needed to know what I had,,,,it seemed the right approach to take at the time...the CK is similar only much much less severe and even my surgery overall was quick recovery so I dont see this as being a problem..inconvenient more than anything and now....I shoudl be done once and for all....I am hoping for death rather than the long term growth control,,,,,,and if it continues to grow over time, I am sure Dr fields will have improved his techniqe so either way, I should be good to go........
Love you all
Ceecee :-*
Such is life...Finally identified...vidian nerve schwanomma, 2.8x2.8x3cm.....in the middle but under my brain.....post transphenoidal endoscopic surgery April 19th, 2007 Pre CK treatment in Sept 07.....re-arranged cavity in hopes of reducing side effects and now officially diagnosed as hard headed.

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: Finished CK Yesterday
« Reply #5 on: October 20, 2007, 11:50:51 pm »
Yay, another "vidian nerve schwanomma, already treated with post transphenoidal endoscopic surgery and some cavity re-arranging", bites the dust!

I guess it is not your plain vanilla AN, but it sounds like it went as well as could be expected, with a bonus free suntan thrown in. I hope you feel better with every passing day.

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.