Update on Nancy Drew's GK

[Nancy Drew]

I'll take all of the NORMAL I can get!

[Nancy Drew]

OK   So maybe the AN is talking to me now.  This morning when I got out of bed, I was pulled to the left (my AN side) and slammed up against the wall like a magnet.  When I tried to pull away, I went slamming back into the wall.  I had to get my husband to pull me back to the bed.  I took some Tylenol thinking maybe the AN had swollen, but I threw it up ten minutes later.  I stayed in bed about 45 minutes, and when I got up the pull to the left wasn't as bad.  Eventually the pull to the left calmed down, and I was left with just a bit of dizziness.  I took some more Tylenol, and I managed to go out for a short walk with my husband by my side just in case the dizziness became a problem.  I will call the doctor tomorrow to see if I should be worried.  I must say that I was disturbed by this incident.  Have any of you experience something similar?  I'm still feeling positive . . . just confused.

Nancy

[sgerrard]

Hi Nancy,

That does sound like something with the AN and/or radiation acting up and affecting the balance nerve. Can't hurt to check in with the doctor and discuss it. Fortunately it didn't last too long. Always turning left might have made navigating our world a little difficult.

I notice you are taking Tylenol, no Ibuprofen. Is that for a reason, or just a preference? I ask only because I found Ibuprofen very effective for minor AN symptoms. I'm sure it is like all other AN things, and varies by person.

Hope you continue to do well, and are able to turn both left and right on a voluntary basis.

Steve

[Kate B]

Hi Nancy,

That happened to me at night too. I remember getting up and listing to the left (my AN was on my right side) and walking right into the dresser.  I also remember going to the hair salon and sharing that I felt great and less dizzy only to get up out of the chair and list right into the wall.

That did get better.  I still get off balance if I am over tired.

It is good to check it out though.

Kate

[jb]

I've also had this sensation of being pulled to one side after I had CK.  Mine probably started a couple of months afterwards.  Sometimes it was like being pulled with a magnet, sometimes it was like the floor was severely sloped though I know it's flat.  It's very unsettling, but my episodes usually didn't last long and eventually went away altogether.  My neurologist put me on a low dose of klonopin that seemed to help in the meantime.  You'll probably have a few months of this fun stuff,  but it gets better with time.

JB

[Cheryl R]

Donnalyn, do you use night lights now that maybe in places we never normally had them for the night trips?           That is one thing my dr is big on saying as he said we will have balance issues in the dark when maybe in the day it won't be as bad.         
                                                Cheryl R

[Nancy Drew]

Everything is much better today.  I have a call in to the the doctor, but it sounds like what I experienced was a "normal" reaction.  Steve, I was using Advil for headaches and ear pain, and it didn't seem to help.  I switched to Tylenol, and I got immedicate relief.  I have always been an Advil fan, but it seems Tylenol is doing the job.  Donnalynn, no worries.  Good wishes are always welcome.  JB, I also felt like the floor was sloped.  Sounds like we had a pretty similar experience with the magnet feeling also.  Do any of you feel "on guard" just waiting for somethiing to happen---especially in the beginning post treatment.

Thanks for sharing your experiences.

Nancy    

[sher]

Hi Nancy,
I hear ya, when you say that you just kind of wait to see what the next day brings. I now am trying to decipher what is sinus issues and what are AN issues. I know I have some more swelling going on at 3+ weeks post CK. I have a DR that is not very good at returning phone calls. So I am doing Ibuprophen every 4 to 5 hours. Hang in there! This will pass I am sure.
hugs,
Sherry

[Nancy Drew]

Hi Sherry,

Those sinus issues can be complicated.  Is it just me?  Seems like I have read a lot of stories here with people going to see their ENT with a sinus problem and in the process finding out they have an AN.  Hope you hear from your doctor soon.  My docs office called awhile ago, and the PA said the swelling was probably pushing on the balance nerve.  She said it was a good sign that I wasn't having any problems today.  She said that Advil and Tylenol are not always strong enough to reduce the swelling, and that is when steroids come into play.  Maybe people can chirp in but from what I understand, the swelling can sometimes cut off the blood supply to the balance, hearing or facial nerve.  I think that is why it is important to keep on top of the swelling.  I would say keep on calling the doctor.  I know one thing . . . I will be happy when I get past the "newbie postie" phase.  I think I will feel more comfortable being a "postie" once I have some experience under my belt.  Best wishes to all on the AN journey.

Nancy  

[cindyj]

Hey Nancy!!

I've been remiss on responding to my PM's this weekend - so I just wanted to get a quick post to you here...Glad to hear you're doing better today!  This may sound weird, but I think I might almost feel better with a few symptoms after GK (or CK), because I'd know they actually did do something and that the zapping was doing its job   Know I'm always trying to find a positive, but that is probably a stretch, right   You know I do hope this doesn't remain a problem for you, Nancy!

Talk to you later,

Cindy

[Nancy Drew]

Hi Cindy,

You know, it's not weird at all!!!  Even though the balance issue wasn't fun, it did validate that I indeed had my AN zapped.  I had been wondering there for awhile if I even had GK because it all just seemed to be too good to be true.  Not that I am wishing for any serious symptoms, but at least now I know the AN is responding.  Hopefully it is on its way to "death".

Steve,

On a side note!  Remember when you said I should ask the docs for the GK head frame for my Halloween costume?  They said fine . . . for $10,000.  Lucky you.  You have your CK mask.  Maybe I'll get some SPOCK ears!!! 

Nancy  

[GM]

Normally steroids are prescribed to help with swelling from the treatment (higher tinnitus / full feeling in the ear).  When I had GK I felt like I just finished doing yard work for the whole neighborhood!  I just chilled, watched TV, and crashed early...I felt much better the next day.

As for hearing.., mines pretty much the same.  Tinnitus plays games, but I've noticed it's worse when I'm really tired.  The good news is that I can sleep through the barking dog next door    I put the AN ear up and I'm in dream-land 

[GRACE1]

Nancy,

I am sorry I missed keeping up with your GK date.  I have not been on the site for about 2 weeks.  I am so happy for you that it is all over and you are feeling good.  Sorry you had that one incident.  I knew you would do fine just like I did.  Isn't it great to have it all behind you?  You're a trooper, and I'm sure you will continue to do well.  Take care!

Grace

[Nancy Drew]

Thanks so much to all of your for your support.  I am beginning to see the connection of being tired and the symptoms getting worse.  Yesterday I went back to my volunteer work at Children's Hospital where I work on the oncology unit.  The folks there told me kids often deal with radiation better than adults.  They said "shame on you" for trying to do too much too soon.  They said the biggest part of the healing process is to take it easy (rest) and pace yourself.  I figure they are the experts so I came home and chilled out.  The fatigue is bothersome at times.  Day by day.  I am still feeling very positive.....die tumor die!!!

Nancy

[GRACE1]

Nancy - Give us an update.  I want to know how you are doing.   Grace