Post GK - Hindsight Decision - Watch and Wait No More

[keepingthefaith]

It has been a long journey. While I was diagnosed only three plus years ago I am sure I have had my AN for at least five years. Like many others complaining about the "fullness in your    head," hearing loss, tinnitus, etc., I  was diagnosed as having "allergies" and/or "sinusitis."
 
Admittedly frustrated I went to my third Ear, Nose and Throat specialist in search of a solution. He told me--"I think the problems you describe are more than that"  and he scheduled me for an MRI and Bingo, a small 9 mm AN was finally discovered to be my problem.
 
Since that finding the consensus the past three years was "watch and wait". Why, because for three years the tumor showed no growth, but, my hearing got progressively worse (down to 30%).
 
I have visited the Mayo Clinic (Dr. Lundy), Jefferson University Hospital (Dr. Andrews), Doctors Hospital in Coral Gables (Dr. Wolfe) and several weeks ago I finally bit the bullet and had Gamma Knife...... at the University of Pittsburgh (Dr. Kondziolka). I actually preferred the fractionated procedure recommended by Dr. Andrews, but this required five weeks of daily radiation. Bottom line, living in downtown Philly was just too expensive, when you add in that I am very claustrophobic.
 
When I emailed a member of our Ft. Lauderdale support group to ask a few questions she called and sung the praises of her experience of Gamma Knife with Dr. Kondziolka in Pittsburgh. The very day I wrote an email to UPMC I received a personal email response from Dr. Lunsford (Saturday night no less). Dr. Lunsford is the doctor who brought the Gamma Knife to UPMC and trains other doctors around the nation. 
 
Subsequently I wrote and asked to speak to Dr. Kondziolka who was then speaking at the ANA Symposium in Chicago. His staff requested I send them all my MRI's and hearing tests. When Dr. Kondziolka returned from Symposium he personally called me and we spent a long time discussing my situation.
 
As a result we drove from Florida to Pittsburgh, (2400 miles roundtrip) but it was worth it. Everything went as planned. The GK staff was almost Perfexion (name of GK device). Dr. Kondziolka met me the day before radiation---answered my few remaining questions--told me not to worry about the pre-MRI as it would only take 15-20 minutes (usually they are 45 min to an hour).
 
The GK procedure went off as scheduled and now I am in "Watch and Wait" mode again. I was told at the outset--Roger, almost assuredly you will not get better--the purpose of GK is to try to ensure you get no worse! So I'm praying and hope he is right! My next MRI in March 2010 will tell.
 
Good luck all--I am glad it is over...as stated above, I wish I had bitten the bullet much sooner when my hearing was still 90%.

[Jim Scott]

keepingthefaith ~

Thanks for the update!  I'm pleased to learn that you took the initiative and made a decision then followed up on it with alacrity. I'm further pleased to learn that so far, the GK treatment seems to have been successful.  I hope and will pray that not only will the tumor's growth be 'stabilized' but that future MRI scans will show necrosis and perhaps, even some shrinkage. 

Jim

[GM]

Congratulations fellow "Zapper" !!    Perfexion is actually the newest GK machine out there...so you got the best!  GK can kill the tumor and cause shrinkage...or stop it from growing.  So you do have the possibility of the tumor getting smaller.

If you get a "full feeling" in your AN ear in a couple of weeks, follow up with you Doc for some steroids.  As a side note it is totally normal for the tumor to increase in size slightly over the next two years.  Mine went from 1.8 CM - 2.1 cm over two years. 

I'd also suggest that you get a hearing test when you have that MRI in 2010 to see where your hearing is at...this creates a much better picture than just the MRI alone.

GM