One year post GK MRI

[Nancy Drew]

Hi Everyone,

Can't believe it has been one year since I had GK.  Saw my doctor today, and this is what he had to say.  MRI showed that my AN grew one mm this past year.  He said this is expected sometimes and not to worry.  If it's the same size or smaller next year then great...no worries.  If it's the same or smaller at the three year mark, then probably a done deal.  If there is growth, he said maybe surgery just depending on the amt. of growth, location, etc.  I have no post GK hearing loss....GREAT!!!

However, from Jan. 2009 to July 2009 there has been a 70% loss of the balance nerve.  Didn't have any pre-GK balance issues.  He said GK can affect the balance nerve 25% of the time...is this a true stat?  Told him I was going to vestibular therapy.  He never recommended it.  I just figured it would help.  When I asked him why he didn't refer me for vestibular therapy, he said he didn't think it would help.  However, he said if I thought it helped then keep going.  Now I am beginning to question the VT and thinking it has been more a psychological thing instead.  It has been six weeks now, and I have only seen slight changes.  And, when I ask my husband and friends to do the same exercises, they usually can't do them either....especially the ones with eyes closed.  I'm just gonna think about stopping the VT for now.  I would sure hate to waste the money if it's not really helping.

The doc is thinking the balance nerve will completely die with time.  He said the other nerve will take over.  He said if the balance issues really affect the quality of my life, then he will do another balance test and go from there.  He told me about the gentamicin shots that he can give to kill the balance nerve, but then there is the risk of losing my hearing.  I don't think I'll have to go there, and I am not impressed with this procedure after researching it.

All in all, I would say this was an OK MRI.  I guess I am back to the W&W mode again.  I was ready for some shrinkage or signs of death, but I'll just have to wait until next year.  In the meantime, I will be working on the balance...with or without therapy. Thanks to all of you for your support.  You guys are the best.

Nancy

[sgerrard]

Hi Nancy,

I saw your other post too, but this one didn't have any replies yet. I don't know of a solid statistic on balance issues after radiation treatment, only that it does happen sometimes. 25% might just be the numerical way of saying sometimes. I think it happens because radiation doesn't kill the tumor quickly, and the AN has some time to continue doing its mischief. 1 mm after 1 year is pretty minimal swelling, or may have just been a little more growth before the tumor died. I bet your next MRIs will show that the AN is done for. It does seem amazing that it has already been a year!

I don't know much about the vestibular therapy either. I think the main thing is keep on doing something that challenges your sense of balance, to push the process of adjusting along. Stand up paddle board, or skiing, or hiking around, or Wii Fit, or doing VT exercises, what ever seems right for you. I would agree that gentamycin would be a last resort, you don't want to lose that precious hearing. I'm betting you will do okay on your own.

So here is to year number two, may it be a better and brighter one for you. Take care.

Steve

[Nancy Drew]

Hi Steve,

Nice hearing from you.  I'm sure everything is going to be OK with my AN....just a waiting game.  I am a bit confused, however, that a MRI I had at 3 months showed some shrinkage and now it seems to be growing.  But, the doctor said this happens and not to worry so I will just take him at his word.  One mm is nothing to really get upset about at this point.  As far as balance issues, I am disappointed that I am having to deal with this, but it's just a risk that comes with radiation.  I do a lot of hiking, but I use a trekking pole now which helps a lot.  I do fine with the poles when I am snowshoeing, also.  I have a Wii Fit and have mastered all of the balance games, but the therapist said I have been cheating....leaning too far forward.  I don't have any problems with riding my bike.  Just have to be careful when I look over my shoulder.  I think my days of walking on a log to cross a stream are over....or at least for now.

I suppose you just take it day by day in life anyway.  With this AN it is more like MRI to MRI.  Now I guess I'll  just have to develop a friendship with this little AN.  More like a love/hate relationship at times.  I am so thankful, though, that I have my hearing, and I am sure I can beat the balance issues.  Thanks for your support, Steve.

Nancy 

[lawmama]

Hi Nancy,

Congratulations on making it a year post-treatment.  Hopefully your MRI next year will show some signs of AN death.  Maybe your AN is just stubborn and was trying to hold on, but we are all going to help you wish that sucker dead!   

I am pre-treatment, but severe vertigo and dizziness was my presenting symptom, so I can sympathize.  I haven't really found much that seems to help, but others have made some recommendations to me so maybe some of them will work for you.  My doctor told me to try dramamine (the kind you take for seasickness), someone on this board recommended ginger caplets, and I've also heard that a cheaper alternative to VT can be the Wii fit balance exercises.  Like I said, none of these worked for me, but maybe you can give one or two a try and see if any help you.

Best of luck this year and hopefully your balance will improve.

Lyn

[Nancy Drew]

Thanks Lyn for the well wishes.  I am sorry you have been diagnosed with an AN.  I remember how it was when I was first diagnosed....SCARY!!!  Mine was found by accident and I wasn't having any symptoms so just left it alone for a couple of years.  Then some slight growth appeared and I decided it was time to do something. I don't really experience much dizziness/vertigo.  Mostly I just run into things or walk sort of drunk.....and a few falls (but, they were graceful ones!)

Have you decided what to do with your AN or are you still in the confusion mode?  At least with these ANs we have some time since they are slow growers.  I wish you the best.  Good luck with your dizziness.  Hope you find something that works.

Nancy