Author Topic: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona  (Read 56810 times)

Debbi

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #105 on: June 22, 2008, 08:32:26 am »
Wow, Mary - I was goign through such ups and downs reading your recent post.  When I got to the part about the doctor suggesting translab, I nearly fell out of my chair (and I'm not usually that off-balance!)  I can't imagine how stunning that must have been - especially, as you say, because that was the very thing you wanted to avoid. 

I guess the good news (I agree, the glass is usually half full when you really look at it) is that you don't have to make a decisoin right now - you've got time.  And, as Steve said, it is possible that the balance nerve on your AN side will continue to decline.  I found it very interesting (and logical) that the brain would be more confused by having a partially functioning balance nerve on that side.  In my case, my nerve was destroyed, so my brain could get right about the job of compensating - your brain has a much harder task.  Anyway, that was most interesting - yet another facet of this whole AN thing that I didn't know.

I know you'll miss Weldon, but what joy when he AND your grandkids come home on the 29th!  Just one more week!  In the meantime, be kind to yourself.  You have such a wonderful spirit and attitude and I know that those things, along with your great support system, will get you through this.  In the meantime, take a moment to to laugh about what a pair you and I would make - me with the messed up face and you constantly threatening to tip over! ;D  Still the same inside, though!

Sending you lots of good thoughts.

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

ppearl214

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #106 on: June 22, 2008, 09:23:45 am »
My very dear Mary,

Saw your update..... glad you are becoming the best informed you can be.   :-*

I have to share with you one thing that I think many radio-patients here can attest.  The waiting, post-treatment, is the most difficult. Now, I have to keep in mind that you had your CK not even a month ago, so like you, I am anxiously awaiting to hear that (hopefully) its doing the trick and killing that sucker.  Patience is a virtue... and while you continue to research your treatments for balance issues (hang in there!), hearing devices, etc.... pls keep in mind that it's just less than a month since treatment... and time will be needed to see if that sucker dies.  I love how you are covering all of your bases and doing what is best for you.... and I'm sending continued wishes for wellness that the CK will do the trick and no other treatments options (ie: microsurgical, etc) will be needed.

Hang tough hun! My best to Weldon!  Know I continue to cheer you on!

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

Kaybo

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #107 on: June 27, 2008, 08:55:04 am »
Mary~
I am trying to get caught up on everyone since I have been out of town!  I was shocked to read that the Dr. suggested a full translab if they go in - WOW, that was some news.  At least you have a lot of time to think it over and let's hope that it just continues to take care of itself with time!!

Enjoy those grandkids!!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #108 on: June 27, 2008, 09:44:42 am »
Hi all,

I have had time to reflect on the events of late. I am a researcher by nature. Sometimes that gets me into "interesting" situations. Once I figure out there is something in my life that needs to be addressed, but I am not familiar enough....I am right into research mode. Knowing my insurance's HUGE deductible had been met this year due to CK, my hubby and I figured before the end of '08, if possible, we would do any other procedures needed. Seems reasonable. But then I never thought, in a million years, someone would suggest I might want to consider translab. That is off MY list of viable options, unless someday my tumor, "Goldie" is deemed alive and well, again.

I very much appreciate everyone's input, even the last doctor's. I do see his point. However, I ENJOYED reading the inputs of my good friends here. We are all in the same unwelcome situation, dealing with the same challenges. This site gives me the insight of people who have found their own path through the maze of information.

Now at least I have the information I need to decide what to do if my dizziness does not improve more. It is still and issue, but I have to say I am proud of the challenges I have faced this week. I have been getting dishes in and out of the dishwasher, doing the laundry and best of all worlds, scooping our big dogs "deposits" out of the back yard! Now to many this sounds minimal, I know. To me, it is big! It is life and I am a participant. Now these things I have done just have to be some of my least favorite ways to participate in life, but they are necessary. Without my rock and protector here, I have had to go way out of my comfort zone. This is a good thing. I need to prove to myself that even though I feel incredibly dizzy much of the time, I can function to a bigger extent than I thought without falling flat on my face I just need to stop afterwards, regain my bearings and subdue and nausea rearing its ugly head. I am doing it! ;D

My Wii Fit adventures will have to wait. I do see it will be valuable for me, though. What a FUN way to deal with balance issues. Without Weldon, I do feel insecure pushing beyond my vestibular exercises and chores. I feel like I am having a little more time that is not as dizzy. I think this will be a little longer process for me than for some others. So be it. When the dizziness subsides I will be a person who really, really appreciates being able to have balance. I must say before this, I didn't go through life thinking, "WOW, I didn't fall when making the bed, or putting folded clothes away!" So another blessing is on my list.

I am now satisfied I know what I need to know for now and I am waiting to see what happens at my first follow-up MRI late this year. Meanwhile, I am pirating, reading and experiencing life with you wonderful people in AN land. Thank you for being here.
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

Kaybo

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #109 on: June 27, 2008, 05:32:01 pm »
Mary~
Where'd you find a Wii Fit?  I can't find one ANYWHERE!  They told me today at WalMart that even when they send them - they only get 2!!!!!!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #110 on: June 27, 2008, 05:49:57 pm »
Hi Kay,

Ebay! I paid more than list, but Father's Day was here. I made sure the person had many really good and feedbacks. Father's Day was here and I really wanted to get it for my hisband. He had mentioned an interest in it and as with most men, I think it is hard to find something HE would think is special. Our entire family loves it, even my mom who just watches. I really think it will be good for my balance and my husband was playing (using?) it everyday and tracking his progress. He said it was fu to do exercise and enjoy it! :D

Good luck finding it. Maybe Amazon has it somewhere, too?

Mary
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

sgerrard

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #111 on: June 27, 2008, 08:27:57 pm »
I have been getting dishes in and out of the dishwasher, doing the laundry and best of all worlds, scooping our big dogs "deposits" out of the back yard!

That sounds positively thrilling.  :D

I need to prove to myself that even though I feel incredibly dizzy much of the time, I can function to a bigger extent than I thought without falling flat on my face I just need to stop afterwards, regain my bearings and subdue and nausea rearing its ugly head. I am doing it! ;D

That sounds a lot like the pattern of balance recovery experienced by those who lose a balance nerve during surgery. Which is a good thing; it suggests to me that with some more time, your brain will adjust to the new situation and you will become quite functional again.

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.

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #112 on: June 27, 2008, 10:57:03 pm »
I like the way you think, Steve!  :)
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

cindyj

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #113 on: June 30, 2008, 12:17:06 pm »
Hey Mary!!

Just got back in from being out of town a few days - 4 days w/ no AN forum - withdrawal symptoms were starting to set in...

Glad to see you feel like you are getting better.  Know those moments of being able to do a chore with confidence are huge.  Hope things continue in this positive direction for you - hopefully, the spinning and nauseousness will subside soon - know that is an AWFUL feeling.

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #114 on: July 12, 2008, 12:46:18 pm »
Hi everyone,

I am slow getting back to you. My grandkids are here, providing me with entertainment and unique vestibular exercises.  ;D  I am slowly progressing. I still go up and down, never feeling 100% balanced, but more time with tolerable balance and fewer times with the world swaying and swirling. I still have very few times with any kind of headache and no facial side effects or twitches in ages. My hearing seems to keep its fluctuation from basd to worse. I really don't discern much of a change.

Now for my dogs......they are RIGHT there concerned about me walking backwards, walking sideways with my head going back and forth and me standing in the corner with one foot in front of the other and my eyes closed for 30 seconds. They want to "help". They know I am not stable, and try to stop mem from doing things that keep me imbalanced. Oh, I think I get extra credit for this. Luckily my rock, Weldon is right there to keep them from completely stopping my pursuits. So dizziness happens.  :D

So this dizzy dame keeps progressing and I am reading the site everyday although I am not as able to spend as much time on it. I will return more often when the grandkids leave in August. I am going to miss them. My grandson now jumps up to talke to me directly in my good left ear. There are plenty of laughs about what I THINK they say. For instance my 9 year old grandson said after watching a video, "I wanna rewind!" I thought he said, "I want some wine."  :D

I am cheering on you newbies, I know decision making is hard. I still have not regretted my decision.

Take care all!

Mary  8)


Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

Debbi

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #115 on: July 12, 2008, 01:25:58 pm »
Mary-

Good to hear from you - and so glad you are enjoying the time with grandkids!  Had to laugh about your dogs - mine is a collie, a natural "herder" which is exactly what I don't need right now!  We'd probably do a little better without the caring concern of our furry four-legged family members...  but, you've got to love them!

Enjoy the time with the grandkids, Mary!

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #116 on: July 12, 2008, 02:52:36 pm »
Debbi, It is so good to hear from you and tell your herder Hi from my hunters. I must say having a furry friend is very comforting at times. If I take a nap they are right there cuddling with me. I love y pups, but geez sometimes they are "helpful".

I hurried and wrote the last email. I see all the typos and I am glad people are patient here. I have really shaky hands (worsening for last 4 years) so I miss keys and when I hurry and don't proof my email. Forgive me all.

Mary
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

sgerrard

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #117 on: July 12, 2008, 06:42:23 pm »
Hi Mary,

Glad to hear you are making slow but steady progress. Enjoy the kids and the dogs and the summer weather.  :)

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.

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #118 on: July 12, 2008, 07:21:18 pm »
Thanks, Steve, We have summer weather in spades here. We did have 2.1 inches of rain day before yesterday, about 1/4 of our yearly rainfall overnight. My plants are happy and the cactus are fat.

Hope all is well at your neck of the woods.

Mary  8)
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

cindyj

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #119 on: July 13, 2008, 01:49:03 pm »
Hi Mary,

Good to hear from you - was wondering how you've been doing...glad you're still progressing in the right directiion, though I'm sure you wish it would move along more quickly. The grandkids are with you til August?  Wow - you are a very good grandmother!  That's a lot of work, but a joy, no doubt.

Keep in touch as you have time and take care,

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings