My Gamma Knife Story (7/25/13)

[Nank]

Hello all,

I had Gamma Knife Treatment on 7/25/13.  I went to my local hospital to have it done.  I felt comfortable with the neurosurgeon, who has been my neurosurgeon since 2007 when they found my other schwannoma that is in my T1 area, 1 inch from spine.  Anyway, once I met the radiology oncologist, I loved him and just decided to go local.

Had to be at hospital at 6:00 am for lidocaine on my forehead.  Then at about 7 or 7:30 they came in to put the headframe on.  I was given Versed.  Then wheeled down to MRI.  Since I am claustrophobic, I was "out" for this part.  They set me up on the table and that was it.

Back to the room, waited for a while for them to work it out.  Then back down to the Gamma Knife room.  Still with head frame on, not comfortable to lay back great or anything, but okay.  I even got up to go to bathroom before this. 

Then I was placed on the table of the Gamma Knife.  That was a little tough to get into position, just because of the headframe and neck.  But once I was okay, I was put out again.  I might have been able to do this part without anesthesia, because I am not really sure how far your head goes in. 

Back to my holding room, I think I was out for the whole ride back.  Then removal of headframe. The one pin hole was bleeding, but not too much.   just laid around, wake up a little, have some gingerale and cookies, go to the bathroom and go home.  I think we were out of there by 12:30 pm.  We stopped at the mall (I stayed in car) picked up lunch, back to my house, eat and pass out for about 2 hours.  (Mostly because I barely slept the night before).

The pin sites do hurt.  The ones in the back made it hard to sleep because every way I turn my head you can "feel" it.  But already two days later, that is getting less.  I have been doing neosporin on forehead pin sites and they are pretty small.  I was expecting "wounds". 

I have a follow up next Friday with doctors and I will ask my list of questions then.  I sort of wish you just "knew" it was over and could get on with life.  But I have had my other schwannoma for so long, why not live with this one too.  I hope it shrinks and does its thing!

That is my story.  I have read alot hear and learned alot on this website and am totally greatful for it!

[robinb]

Hi-

I was thinking of you since the 25th.

I expect your pin sites wont be bothersome by the time you go back to see the docs.

So glad it went well for you!

[Nank]

Now my right eyelid is drooping.  I hope it is only temporary.

Just going to update here so I remember what happened to me!

[nftwoed]

Hi Nank;
   It's likely the ptosis is temporary. Would say mine lasted about 5 years after Translab though. Vastly different procedures, however!

[nftwoed]

Hi Nank;
   Have they mentioned to you that you are likely NF-2 with the AN and spinal tumor? Do you mind sharing your age?

[Nank]

My neurologist sent me for the bloodwork for NF2 back in June, but it still hasn't come back yet.

Neurosurgeon says  it is only NF2 if you have two ANs.  I said you mean the schwannoma I have had all of these years doesn't count?

I am 46 years old.

[nftwoed]

Hi Nank;

   If NF-2, it's possible a contralateral AN will develop. Maybe even several years down the road.

   Guess I disagree with your neuro. NF-2 is "any two of" tumors usually associated with NF-2. You've a spinal schwannoma and an AN.

   There exists a "mosaic" form, in which symptoms don't exactly fit usual definition.

   To my knowledge, blood tests for NF-2 are still only about 60% accurate.

   Would say you have age in your favor to a degree.

[Nank]

I went for follow up with radiology oncologist!  I brought the staff some chocolates and the LOVED it!

We discussed my eyelid droop which he states will go away when swelling goes completely down.  My pin sites do still hurt a little bit, but getting better each day.  He said the AN was wrapped around the nerve and I could have gone deaf at any time.  Lucky to catch it so early.   

I asked him questions about NF2 but he didn't think so.  I might pursue on my own, we will see.  He said that he could also "zap" my other schwannoma in the future if needed.  I was happy to hear that because I don't want to get it "cut" out, it is in such a bad spot for that. 

Six months will be the first MRI.  He also said to do an updated hearing test at that time.

I am leaving for a week at the beach.  I just want to relax and forget!!!

I just wish the tinnitus could stop.  That is the thing that is DRIVING ME CRAZY!!!!!