AN continues to grow after GK

[Carol P.]

Well, it looks like I may be one of the 6% that GK does not work for.  Had my gamma knife in March of 2012 on a 1.87 cm an.  Everything seemed to go well and the an turned necrotic in the center on the first & second follow up MRI's.  Now, however, the "dead space" is filling in and the an is the same size as it was when we started.  In other words, it may be growing and filling in the dead space that was created by the GK.  I understand that the an was never going to go away but it should have shrunk somewhat as the inside turned necrotic and the an imploded on itself.  Now I may have to consider surgery and I am, frankly, scared to death.  Has anyone had this experience?  What advice can you offer me?  I've lost 60% of the hearing in my left ear and I have balance issues and tinnitus.  These symptoms seem to be static; they are not getting worse.  The hearing loss and the tinnitus were present before the GK. 

[Brad1230]

Hi Carol,

I have had the exact same experience with growth post GK. I am now 2 1/2 years post GK and mine has grown from 1.8 to 2.5 cm. I am looking at surgery in January (most likely translab as i was told GK does damage to the nerves and my hearing is terrible on that side anyways). If the AN is the same size you may want to take a wait and see approach and it does sound like your symptoms are not progressing as well. Make sure you ask a lot of questions and weigh all of your options!
Good Luck!
Brad

[rupert]

Well, it looks like I may be one of the 6% that GK does not work for.  Had my gamma knife in March of 2012 on a 1.87 cm an.    Now, however, the "dead space" is filling in and the an is the same size as it was when we started.  In other words, it may be growing and filling in the dead space that was created by the GK.  I understand that the an was never going to go away but it should have shrunk somewhat as the inside turned necrotic and the an imploded on itself.  Now I may have to consider surgery and I am, frankly, scared to death.  Has anyone had this experience?  What advice can you offer me?   

I think you may be jumping to conclusions too quickly about any type of regrowth.  If the AN is the same size after 2 years as it was at treatment, it is not growing.  The MRI showing necrosis and then filling back in is typical and normal at that stage.  I don't believe it means anything. What does your doctor say??   Sometimes they shrink, sometimes not. The goal is to stop any further growth over time.  With the GK treatment it can take 6 to 10 years before its completely dead. Most doctors would want to see a pattern of increase in size over  time to be considered regrowth. IE.  an increase on an MRI then in a year another increase. Good luck to you.

[Carol P.]

Thank you, Brad & Rupert, for your words of caution and wisdom.  You've helped to "talk me off the ledge"!  Rupert, my doctor is not at all convinced that its growing--that's why the repeat MRI's so close together.  I sure do hope you're right.  Brad, I wish you luck with your procedure in January.  I guess I do have some time to "wait & see".  My first instinct is to just get the darn thing out of there but that may not be the wisest choice.  Appreciated your input!

[TheBrit109]

I am 11 years post GK treatment. After yearly check ups with no change and most symptoms abating. My Neuro guy tells me 5 yearly check up instead of yearly as I was doing so well. This week, almost 5 years to the day since my last MRI my symptoms have come back. Tingling on my head and face, poor balance etc etc.
I have an MRI scheduled for tomorrow to see what the heck happened. I thought this was all behind me, instead it's rearing its ugly head again.

[keithmac]

I am 11 years post GK treatment. After yearly check ups with no change and most symptoms abating. My Neuro guy tells me 5 yearly check up instead of yearly as I was doing so well. This week, almost 5 years to the day since my last MRI my symptoms have come back. Tingling on my head and face, poor balance etc etc.
I have an MRI scheduled for tomorrow to see what the heck happened. I thought this was all behind me, instead it's rearing its ugly head again.

That's really rough - let us know what the MRI scan result is, will you?

[arizonajack]

Your symptoms are static and your AN size is the same after two years.

That's a good thing.

Take a look at these images of the progression of post GK changes.

http://ars.els-cdn.com/content/image/1-s2.0-S0360301612004336-gr3.jpg

There might not be any noticeable shrinkage until close to the 3 year mark.

And even if it doesn't shrink, the important thing is that it doesn't grow.