Intracanicular AN

[sally]

Has anyone had radiosurgery for an intracanicular AN?  Surgery is out because the AN is inside the nerve.  Mine is small- 3mm x 4mm yet I've
lost all but 36% of the hearing from my right ear.  I've also have tinnitus and really struggle at my office to hear someone.  The radiologist has
recommended GK, a one shot deal that will hopefully kill the little sucker.  The doc made me watch the video showing the head frame being
attached, etc and I keep telling myself that it's like having a baby...one day of pain/anxiety and then it will be over.  The hospital is 15 minutes
from my house.  I go back to see the radiologist 2 weeks before treatment.  Any suggestions from anyone?
sally

[Battyp]

mine was inter and extra canicular...

Sue had GK or Cyber I can't remember she should be along shortly to straighten me out...from what I've read the head frame wasn't a big deal. I know I had one with my surgery but it was on and off while I was a sleep so other than the mark on my head I don't remember it )

[ppearl214]

Hi Sally,

My left AN is IAC. At time of diagnosis (last May), it was 5mm x 7mm IAC.  At time of my Cyberknife, it was 1cm x 7mm and a hint of a tail sticking out of IAC. The key, for me, for checking into GK and CK was.. would there be enough room for the AN to swell inside the IAC... please confer with your dr closely on that question.

Here's wishing you well.... you are so going to be fine... you found it early and numerous options available.

Phyl

[Kilroy1976]

Heh, I can't say for certain, but I DOUBT that the GK is like having a baby. It took less than five minutes to attach the headframe. I didn't do any screaming. The whole process from check in to check out took six hours, and most of that was because I had to wait for five other patients with "less-difficult" tumors to be zapped first. Even the anxiety probably doesn't measure up to that of having a baby. But, I'm a guy, so who's to say?

I don't know if my tumor was intracanicular (25 cent word there) or not, but the docs seemed to think that if I had opted for surgery, they would have had to clip the nerve on each side and remove that along with the AN. They didn't seem to think that there would be a problem doing radiation.

[Sue]

Yes, Sue is checking in to tell you that whole head frame thing LOOKS SCARY, but isn't. They put the "numbing solution" into you via a shot, after they but a cream on you to deaden the skin. It was a pinprick, and as soon as you register the bit of pain, it is gone.  The actual attachment of the frame is painless. I felt a little pressure on my right side, because for some reason that side was in tighter. I had a bigger mark left on that side after the procedure. You feel a bit Darth Vader-ish or Man in the Iron Mask-ish...but they give you that relaxing pill before they start all of this and by the time the frame is attached you are basically in LaLa Land anyway and don't really care what they have bolted into your head!!  If you have ever had a major dental procedure such as putting on a new crown/cap...believe me that is far more traumatic (if that's the right word) than the headframe. There is no pain, except for that pinprick, for the 5-6 hours of your treatment. The worst thing about the whole experience was the insomnia cause by the generic Decadron that I took for a week following the GK.  I do not regret my GK treatment....at least not yet .  It's only been since April 18.  Check in with me in 10-15 years!! 

[sally]

Thanks everyone for your replies and info. 
Kilroy-by comparing GK to having a baby I meant that it was a one day ordeal and then over with.
Are there any major risks with GK? ( a question I'm planning on asking my radiologist).
My sisters think I'm crazy to be going back to work after only one day of rest at home.
Is that realistic?  Also, are there certain meds you should take following GK?
sally

[ppearl214]

Sally,

I can only answer to CK, not GK (Sue is our recent -- to my knowledge -- patient) but from a CK standpoint, I was back at work the following week, some fatique, some initial enhanced tinnitus (which has now diminished), some dizziness (esp. in the dark, but I think most AN patients, regardless of treatment, have reported something along this line), minimal hearing loss (hoping it's temp, which most of the time it is).  Overall, I have to say, even when I'm having a bad day, I remind myself I could be in a lot worse shape.  I work, I come, I go, I drive, I party, I walk my dog...

Week of treatment, I was out for lunch/brunch every day post treatment, napped for a few hours, was goofing off by dinner time!

BTW, decadron or some from of steroid or anti inflammatory is (on occassion) initially prescribed due to swelling.... sometimes, it's re-prescribed down the road a few months as this thing has to swell before it implodes.

Hope any of this helps.... only speaking from my own experience.
Phyl

[sally]

Thanks Phyl-
The more info I get, the better I feel.  My treatment is only 3 weeks away.
I see the radiologist on Aug. 9th and I just want to hear him or anyone say
"yes, you are doing the right thing."  My AN is very small, yet my hearing loss
and tinnitus so significant.
sally

[Sue]

Hi Sally

Just ask your dr. about the steroid business.  It is common for them to prescribe that, but some people didn't have it.  Really, that was the think that messed me up the most. My dr. told my husband it would take a couple of weeks before I felt like myself. It took 3 weeks, and for me, I was very glad I didn't have to go to work. I did drive that first week to an already existing eye appointment and did just fine, but I was so tired from lack of sleep that I didn't drive after that.  My opthamologist was all fascinated with my "problem", by the way. The first day of the steroid, however, was wonderful. I felt like a million bucks. Plan on cleaning your house that day, or climb a mountain, because that will be the day to do it!!