Author Topic: 4 years after Gamma Knife  (Read 3079 times)

sewnice50

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4 years after Gamma Knife
« on: May 25, 2010, 08:10:55 am »
I also posted this in post procedure.

I started out with a 1.5CM tumor, it grew to 1.7CM over a few years and I decided to have Gamma knife in 2006.  I made the watch and wait decision but I wish I had done the Gamma Knife right away.  The sooner the better for the best outcome.  The only side affect I had within the first year was a tingling and numbing feeling in my face on the AN side occasionally, but this is very rare now. 

One year after the Gamma knife the tumor had swelled to 2CM.  The third year it was 1.6CM.  It is now 1.6cm.  I was a little alarmed to hear that because I had hoped to continue to hear it was shrinking but my doctor said it’s a good sign because it is not growing. I needed reassurance so I asked him if it was dying and he said it’s hard to tell.  Here is a side note.  The doctor, my dear doctor, who did the Gamma knife procedure, with whom I have been seeing for 6 years has now left the hospital in March 2010, so I saw his associate.  He was also at the procedure but has a different personality.  I still am happy with him but I think I might have taken he news better from my former doctor.  He had a way of making me feel totally comfortable.

Probably about 2 years after the Gamma Knife I started to notice hearing loss.  I  now have 50% hearing loss on the AN side and that happened very gradually.  All of the loss is with high frequency sounds.  I got a hearing aid in May 2009 and very happy I did.  The only thing I experience with the hearing aid and hearing loss is I can’t seem to figure out where sounds are coming from.   The hearing aid is a Moxi(I don’t work for or sell Moxi hearing aids.) It is as light as a feather. I don’t even know I have it most of the time.  It was expensive but my insurance company ended up paying for it.

My doctor said I should have another MRI in 2011 and maybe after that every other year.  All in all I am doing really well as far as the Gamma Knife and the AN is concerned.  I recommend Gamma Knife if you qualify.  I still feel I did the right thing.

Good luck to all of you who are looking into treatment.  It’s not an easy decision.  Thankfully I had my Doctor to answer all my questions.


Lizard

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Re: 4 years after Gamma Knife
« Reply #1 on: May 25, 2010, 08:50:13 am »

Thanks for sharing.
Great to hear and yes no growth is better than the other alternative, but I'm sure you would love to see that thing shrivel up like a raisin.  Hopefully in time you will...
Its good to know you are still happy with your decision, GK, CK and other types of radiation are great if your tumor is small enough. 
Take care,
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Vivian B.

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Re: 4 years after Gamma Knife
« Reply #2 on: May 28, 2010, 04:00:30 pm »
Thanks for sharing your experience. I am having gammaknife on June 30/2010 so I am always glad to hear from people that experienced the procedure.

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

Jim Scott

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Re: 4 years after Gamma Knife
« Reply #3 on: May 28, 2010, 04:20:40 pm »
Sue ~

We appreciate your update following your 2006 GK treatment.  I'm pleased to learn that your irradiated AN has apparent stabilized, which is the primary goal of radiation.  Shrinkage is a pleasant bonus.  I'm also glad that your post-radiation symptoms have pretty much subsided.  I know it's difficult to 'lose' a doctor you've come to know and trust but nothing stays the same and at least you seem comfortable with the associate who has taken over your case.  That's a plus.  Many AN patients use hearing aids (like you) and they can be a valuable tool to help deal with unilateral hearing loss.  That you seem to be especially pleased with your Unitron Moxi is great.  At almost $2,000., I'm glad your insurance paid for it!   

Thanks again for your update and positive comments regarding your GK experience.  I hope the next year is a good one for you!  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

sgerrard

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Re: 4 years after Gamma Knife
« Reply #4 on: May 28, 2010, 08:06:31 pm »
Not fair, I had to pay for my hearing aid.  >:(

I also have a Moxi, and I like it. I'm glad to hear you are doing so well. At this point, it sounds like you won't have to see the doctor very much anyway, which is the best news, even if they did change doctors on you.

All the best.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.