April 1st = 1 Year

[calimama]

Satman...
Thanks for the feedback and words of encouragement.

I assume that your brainstem swelled due to the surgery (or did you have some compression issues?)... and this is what is normally treated with steriods right? How long did the swelling take to subside?

Good to know that all cases are different... tough to know what that might mean for me!
I know...i know... breathe. Here i am still just packing my bag for the journey... i have yet to start travelling! and have no idea of my path! or destination! But just trying to understand as much as i can before this process takes on momentum of it's own.

You are all so very brave and wise... I, like so many, appreciate your sharing.

[satman]

Hey there calimama,well lets see,I still have some balance issues so my brain stem is still swollen and my surgery was in april / 07 .I was in a 3 day induced coma,I really dont know what the steroids are for,I had 3 operations in a 4 month period and my hair started falling out due to steroids I believe.
The reason my stem was swollen is because I had a 8 cm tumor pushing on it and like most men I ignored the symptoms thinking it was BP related,needless to say,I WAS WRONG. Do you know what size tumor your MRI showed ?
I know your scared but in all honesty, you wont feel a thing.believe me,the surgery is the easy part and you have so many people praying for you,and also to lean on.
Remember it is nothing you did ,it is not your fault.
You have allready beat it really, it's not cancerous. you will be fine ! stay positive.

[leapyrtwins]

Calimama -

I had steroids post op but they were for my facial nerve since it I had a little issue with it when I first woke up in ICU.

I do know that the docs give you something prior to surgery to "shrink" your brain, but I think that's just so they can work inside your head better.  The last thing I recall the anesthesiologist saying to me was "I'm going to give you something to shrink your brain" .  I made some smart-ass comment about not being able to afford a smaller brain than I already had     The next thing I knew, I was waking up in ICU many hours later with the room spinning.  I have no idea what that "something" was.

As Satman said - stay positive, you will be fine.

We're all here for you,

Jan 

[calimama]

thanks Jan and Satman for words of encouragement!

I met with a surgeon today and a radio-type (oncologist? something like that). The consult was for GK and LINAC (fractionated rad), but it also gave me my first crack at taking to a neurosurgeon. It seems that i have the option of radiation (either method) which is great.

Because my AN is med-large (2.2x2.9cm), there are greater risks of facial paralysis (he said 20-30% perm, 50% temporary). I will see what the 2nd doctor has to say next week.

I am leaning towards radiation still (i think). I have more questions by the hour so i need to follow up with these.

Getting there....

[lori67]

I do know that the docs give you something prior to surgery to "shrink" your brain

I think they forgot to give me the antidote for that when they were done...   
Lori

[Boppie]

Satman, While at 12 months I felt great and realized a lot of improvement, I had a lot more change to look forward to in the second year.  My balance and general energy improved slowly and steadily throughout the second year.  And I have had "moments" of knowing that things had advanced vastly. 

At 27 months I no longer have the surprise two-step jog occur.  I can run, though not so gracefully as before.     I am 66.

[Sam Rush]

You had surgery on April Fools day??  Not a good idea!!!   LOL   I still have the same balance problems I had pre-op, 3 1/2 yrs later, but I work around it, still ride motorcycles, bicycles, horses, but gave up flying. My depth perception got bad post-op and no-one can explain why, It probably is not related to the AN. Anyone else notice a depth perception problem???

[MaryBKAriz]

As a newbie, I say congrats on your 1 year anniversary. I am having the balance issue pre treament. Did you have that? I hope it disapates for you, it is annoying for me now, if it gets worse, oh my - world beware. I am wishing you well.

By the way, April 1st this year will be the 40th anniversary of my husband's surprise marriage proposal. We April Fools are still happy and I am thankful for his support. Hope you have a support system, too.

Are you in Satellite biz? TOTALLY off the point. My husband was in sat. communications for 5 years before retiring.

Best Wishes for improved health,

Mary

[satman]

Hi Mary,as a matter of fact I do operate a satellite truck,I work for an ABC affiliate in Dallas,what aspect was your husband involved in ?
CONGRATS on the 40 year mark,thats a huge accomplishment !
As far as the balance issue, I was pretty normal before surgery and what drove me to see the DR. was that all of a sudden I would get dizzy and that was accompanied with a headache and my left eye would go blurry,then came the drunk walk every now and then and  then I would hear a wosh,wosh sound in my left ear,all this would happen at the same time. I kept blowing it off because my DR. had put me on BP medicine and I quit taking it so I thought it was related,needless to sat it was not.
I finally broke and went to see a DR. she wanted to do C scan and thats when they found an 8 cm tumor and the rest is in the history books.
I could not ask for better support between my wife who has been awesome through all this and the people on this forum has been a big part of my motivation.
my wife dealing with my situation in one hospital and her mother in a different hospital had quite a bit on her shoulders.
the day I was released from in-patient re-hab her mother passed,My wife is about the strongest person I know,we are lucky to have a support group.

[Debbi]

Frist of all - congratulations on the upcoming 1-year anniversary!!  And, may I also add that your wife sounds like an amazing woman! 

I am wondering if the fact that I apparently have quite a few balance issues alreay will minimize more issues post surgery?  I've gradually been losing balance for some time now - and it seems that my brain has been adjusting quite well.  Of course, my career as a tight-rope walker had to end  ...  Dr. G congratulated me in his office, telling me that I could totally fail a field sobriety test without actually ever drinking. 

Satman, have a wonderful day, and give your wife a big hug!

Debbi - in from the ledge

[satman]

Hi Debbi,I wish I had more info for you on your balance concerns but there's not a single anwser that fits everybody,we are all different,it's going to depend on many factors,but I do believe that you shouldnt worry to much about it,there will be plenty of time for that.
Just try to relax and get that thing removed and above all "stay positive".
I pray that you little friend is in a great loction for removal,and stay off the ledge. Your balance may be better post-op,Been known to happen.

[ppearl214]

our own lovely tsl/Teresa posed the questions to the docs on the CK Patient Support board about vestibular issues... which their replies really do assist those with issues, regardless of what kind of treatment was performed (ie: micro vs radio-treatments). 

http://www.cyberknifesupport.org/forum/default.aspx?f=1&m=13767

C. Phillip Daspit, M.D. , one that responded in this thread, is a self-professed "dizzy doctor" (neurotologist at Barrow Neuro Institute in AZ) and he really gives some wonderful insight that may help all that inquire.

May be worth a peek.
Phyl

[Brendalu]

Satman,
Congratualations on your one year anniversary!!!  Time flies when you're having fun!!  I personally think April 1st is a great day for surgery.  I had sugery on 4/1/1996, for something other than an AN, and it was a great day.  I celebrate every year! 
Brenda

[leapyrtwins]

So, Satman -

today is your big anniversary 

Any celebration plans?

Congratulations again,

Jan

[Debbi]

Satman - happy, happy, happy anniversary!  Stay away from the high wire, but otherwise have a glorious day!

Debbi - smelling the flowers in NJ