2 yr post GK check -Mayo

[Joey]

Just a bit of news here - my 2 yr GK anniversary was in early October, but due to bad weather issues and rescheduling pitfalls, my 2 year checkup was back on February 1.  It was pretty uneventful - had the MRI, the hearing test, saw the neurologist as well as the ENT....  my hearing has not changed, the tumor has not changed, except for some minimal shrinkage the neuro was pretty sure was noted last time.... even the neuro visit was an abbreviated version of the usual spiel.  I didn't even have to walk the tightrope and close my eyes this time.  Basically we had the conversation about whether I can do everything I want to do, and the answer by me is a resounding yes.  I can ride my bike, ride horse, walk dogs.  The only thing that gets me occasionally is going outside at night and feeling unsure of myself in the dark.  I get occasional bouts of inbalance which hit like lightening bolts, but nothing debilitating.  (I'd also like to say the migraines are better, but don't want to jinx that.)  I'm doing well and I'm grateful.  Suffering from cabin fever after this long winter is all.

I do think my hearing is slightly diminished, though.  Not a huge surprise, but a bit of a downer.   That's my report, just letting everyone know that I'm considered "successful".   Now they have decided to change my MRI status from every 6 months to waiting a year, which is a happy thing to me.  I'm still not fond of the Tube yet.

Peace and love from Joey

[Jim Scott]

Hi, Joey ~

Thanks for that fabulous update!  Always good to read positive outcomes for any AN procedure, and I'm glad your is one of those.  Congratulations!

Jim

[CHD63]

Terrific news, Joey!  I agree ..... going out at night makes me uneasy, as does walking in snow, I have found out this winter!

Keep up the good reports!

Clarice

[sunfish]

Sounds like a very successful radiation story!  Have a great year!

[Nancy Drew]

That's great news, Joey!

I will have to add here that my GK treatment has been very successful also.  Such a good feeling.  In fact, I went to the new support group here in Denver about 8 months ago, and I really feel so lucky after I heard some of the stories.  But, it was great to see lots of positive attitudes.  Sure isn't a one size fits all kind of thing.

Wishing you the best as time goes on.  Maybe some folks will see this post and see that there really are some positive outcomes.

Best,

Nancy

[Vivian B.]

Congratulations. Being a GK postie, I love to hear successful stories.

Vivian

[Joey]

Thanks for all your well wishes everyone!  I know I haven't been one of the "faithful" posters here, esp. since life has more or less settled down with this "thing" -  but I realize the importance of helping others by offering information that might be useful in their quests for decision making.  So I'll continue to lurk and check in.  For those of you newer to the community, this is an awesome source of wisdom, compassion and humor. 

Nancy, I remember how we made our journeys at just about the same time.  Can't believe how far we have come; makes you appreciate the routine of your days, the little stuff.

I never thought I'd be at the point where I don't dwell on this affliction, but here I am.  We all have our dark times but it's good to know there is a point where you can start living life again.  Just a little insight for a Friday.......    from Joey~~

[rupert]

  Joey,    congratulations on the good news from another GK'er.   Thanks for the good words and insight on this snowy Friday also.  Bryan

[Chris P]

Joey,

   So glad to hear you are doing well.  Thanks for the update.  I had the GK last year on June 22 .  I have a small AN on the right side.  All went well with my GK but four months later in October I experienced facial weakness and hearing loss.  My balance is not all that great but worse in the dark as you mentioned. 
   My facial weakness has shown some improvement but still tightness on right side and eye lid does not close all the way.  My vision from the tearing is impaired so I do not drive yet but I can do most everything else.  I have a follow up MRI in June and hopefully the tumor will show shrinkage and the swelling that is causing my facial weakness will be better.
   Well that is a little about me and I am so glad you are enjoying you life.  Stay well.

Chris P

[Joey]

Hey Chris - you've had some bumps in the road - the eye issue must make life hard, esp. not driving part.  It's still amazing to my not-too-scientific mind that the smaller AN's can wreak horrible havoc, too.  I remember when I was trying to decide what to do - I was told not to wait too long because they sensed the "thing" was going to cause trouble (like others here, I literally lost ALL hearing on the AN side overnight..... it was scary.)   Luckily steroids brought back some hearing, and I function ok with word recognition, but I'm not great.  I think a hearing aid will be part of my future, and that's ok.   Maybe social things will be easier for me then.  I've become a bit of a hermit as I get frustrated not hearing people.   I curse cell phones more than the average user.   

Thanks for sharing your story.  I wish for your healing and strength, and for the pesky swelling to abate.

[mk]

Hi Joey,

I am very happy that you have been doing so well. I am also glad to hear about Nancy's treatment success.
Chris, I hope that your problems improve - they almost always do once the initial tumor response to radiation calms down. Hang in there.

Marianna

[Nancy Drew]

Yes, it's not all great...not back to "normal" (pre-AN).  But, it's encouraging to see that as time goes on the acceptance and compensation begins to kick in so you can go on with life without having that AN looking at you in the face all of the time.  I have those stinking balance issues that come up from time to time, but I live with it and just kinda smile that at least I'm not drunk when I bump into something or walk a little crooked.  Also, I have learned to tell people to speak up without feeling guilty.  I have some problems with some word recognition, but I also think that some people just mumble and a person with really top notch hearing would tell someone to speak up anyway.  As I look back on the whole journey... the finding out, figuring out what to do, then having the treatment, dealing with post treatment issues and the first couple of MRIs are just nerve racking.  This  is so "normal", and I think if one didn't have all of those intense and scary feelings it would be rare.  Stay positive everyone going through this process.  It's really hard at times, but it will get better.

Nancy

[crivers]

Joey,

it is great to hear your story. Gives those of us in year one (still having some issues) some hope. I wish you the best going forward.

On the hearing aid - I highly recommend it. I am not sure why I waited 18 months after losing my hearing, but I am so happy that I went in for a trial. It has helped out a ton. I know what you mean by wanting to leave certain situations due to not following the conversation, etc. The aid is a life changer in that respect. Now, if I could just get my AN to stop swelling up and impacting my hearing, I could avoid going to get my aid "readjusted" every couple of months. I'm sure that day will come...soon.

Cayce