Back from GK - doing good

[Sue]

Hi Joey and Nancy,

I'm really glad, Joey, that you are doing great.  Yeah, that head thing is weird and I was surprised at how long that lasted.  Eventually it just fades away.  Eventually.

Nancy, hang in there, girlfriend!  Yeah, I think exercise would be good for you now - walking and being outside if you can and just keeping  yourself occupied to burn up some of that nervous energy building up as you anticipate the big day.  I don't really remember if I was anxious or not.  Well, I was, but I didn't have that long to worry about it, because my GK was scheduled only a month after my first diagnosis.  Like everybody else, I was anxious to get it over with and to get that dang thing killed.

Sue in Vancouver USA

[Joey]

Hi Sue - the head thing is gradually fading, somewhat - at the end of the day, my whole cranium seems just sore to the touch.  I don't even notice the front pin sites anymore, but the back ones hurt a little bit yet, which I noticed when sitting in the dentist chair yesterday.  No big deal!  The really interesting thing I have noticed:   I am now sleeping like a trooper, yes, all night long.  I had been sleeping up to now, with the assistance of pills, and not great quality sleep either.  So, it could be just now some residual tiredness from GK - or quite possibly, I'm just not as stressed out about things at the moment.   It is so good to log my 7 hours of sleep again, I'm sure it's making me nicer to be around.  I'm certainly happier.   Just an update!    Joey

[GRACE1]

Joey,

All sounds good for you.  I had GK in Dec 2006.  I had no problems then or now.  Congratualtions!!!

Grace

[Omaschwannoma]

.....patting you on the back

Hooray I'm glad you are doing so well!  ....raises glass to propose a toast  Have a GREAT life!

[Joey]

Hey again - Thanks all for your well wishes - I have been lurking here, hesitating in posting this as it is not as positive.       I have been seeing some issues in the last week.   On the AN side, there is a strange facial twitch.   It started with the eye itself... however, now it seems to be the eyebrow area and sometimes it's just a weird flutter - ANYONE???  Also, I did check in with the Dr. due to some notably increased dizziness I have noticed while at work.  They are not alarmed and I have been told to take the maximum dose of IBU, which I'm doing.   Luckily the vertigo seems to pass just as quickly as it comes; the facial twitch I could do without.  I am thinking this is the time that the mental strength comes into play.  I also notice that I should be updating my information to reflect my new, twitching status.  Positive thoughts are welcome!   ~~Joey

[GRACE1]

Postive thoughts are coming your way from me.  Once you get past these temporary issues, you will be good to go.

Grace

[Nancy Drew]

Hey Joey,

The past couple of days I have noticed some twitching below my eye on the nonAN side.  It usually happens at night.  I had a scary balance issue four days ago, but it resolved itself in a couple of hours.  For several days after GK, I was on some kind of high.  The fatigue is setting in now, and like you, I also think this is the time for the mental strength to come into play.  I have been lucky with the pin sights.  They only hurt when I push on them.  The ones in the back hurt more than the ones my forehead.  I notice that I am not as steady on my feet sometimes, and I also have noticed that my hearing seems a bit diminished at times....mostly word discrimination.  Not of any great concern to me because I am so happy that I came out with good hearing.  Keep posting with updates, Joey.  You are ahead of me so I am interested in what you have to say.  Hopefully you are doing better every day.

Nancy

[Joey]

Thanks Grace, I'm feeling a bit pensive right now, something comes to mind about waiting for the other shoe to drop.  I was sitting in court this morning doing the clerk thing, and I'm positive people thought I was winking.   I'm learning to compensate for lots of things.  We have lots of big open stairways here, and rather than risk a public spectacle falling I just take the elevator down.  It is feeling like prickly heat up and down that side of my face.  I am one of the lucky ones that experienced other symptoms when my AN was discovered, i.e. sudden complete hearing loss and some balance problems.  To now have this suddenly start up is disappointing - of course, I know it could be far worse.  I have been cruising the posts about mental strength and I am truly amazed at the strong souls there.  I'm trying not to complain, but I've been having a rough time just now.  The tinnitus, even though it's a constant, is no big deal compared to this.  The headaches and frequent ear pain I have learned to live with.    ~Joey

[Joey]

And thank you, Nancy!  I'll post again, rushing right now.  Have a great evening all!   Joey

[GRACE1]

Just try your best to be positive - that other shoe is not going to drop.  Take care!

[GRACE1]

Joey:

How about an update on how you're doing.

Grace

[Joey]

Hi Grace,  Well, I've sort of put this off because I haven't been the most positive lately, although I'm feeling better now.  I was experiencing increasingly weird facial symptoms that prompted a call and then a visit to the Dr.  I am back on steriods and it seems to be helping.  I also had blood work done and it was determined that I am fighting a virus.  They said my electrolytes were "out of whack" and that is partly responsible for feeling crummy.   I was also told to rest a lot and scale back on things.  Never had facial symptoms before; when they started I freaked out a little and began thinking that perhaps I made a bad decision--- however, I was reassured that this doesn't deem failure and is not abnormal.  My eye was really feeling irritated, and they gave me something for that too.   I've picked myself up, a bit more educated now - and I'm ready to go on.  Thanks for checking.  ~~  Joey

And Sue-  Wanted to say thanks for your pm, it came at a good time.  I did take your advice about the cool compresses and the peaceful thoughts.  I bet you are an amazing mom!  ~~Joey

[sgerrard]

It might be worth taking a look at a recent post by JB, who had some major swelling, and did rounds of steroids to control it. He was mainly experiencing hearing nerve issues, I think. He has some nice MRI pics that show the swelling, and eventually the going-back-down, over the course of a year.

http://anausa.org/forum/index.php?topic=7234.0

Post radiation can be weird for a while, but in general, the weirdness does clear up with time.

Steve

[GRACE1]

Joey:  Glad to hear that both you and Nancy Drew are doing better.  I did not have any problems after GK, so I hope both of you get over these issues very soon.  I am going back to Wake Forest on Dec 09 for an MRI 2-years post GK.  I will let you know how that goes - which I feel will be good news.

Grace

[Nancy Drew]

Hi Grace,

Thanks for your cheerleading!!!  It is always nice to see positive outcomes with GK (and all of you other folks, too).  Hope things are settling down for you Joey.  I ended up on steroids last week.  Really couldn't tell that much of a difference other than they made me cranky, and I couldn't sleep very well.  Sunday I went to a play that was very noisy.  My hearing pretty much freaked out, especially during the intermission when I was in the lobby surrounded by a crowd.  Going into treatment, I had better hearing in my AN ear than I did in the nonAN ear.  I notice now (within the past couple of days) that my AN ear is worse.  I will call the doctor tomorrow since this is really the first time I have noticed a distinct difference.  Maybe steroids are needed again.  Thanks again for your support Grace.  You give us GKers hope.

Nancy