what is it like in the Gamma Knife?

[sewnice50]

I found out by accident 2 years ago, during a MRI looking for possible evidence of stoke, that I had a 1.5cm AN. It is now 1.7cm and I need to make my decision soon, as my Dr. has said it is now time.
I am thinking Gamma Knife, this is my Dr.s area of expertise and I think it might be best for me.  I am claustrophobic and very nervous and would like the advantages of the mild sedation offered, but I have sleep apnea and falling asleep without my Cpap would not be good.  If I fall asleep and stop breathing my entire body jolts me awake.  I emailed my Dr. and he said not to worry my head will not move, but I AM worried.

Can anyone answer some questions for me?
I wondered just what is it like in the Gamma knife:

Is it noisy?
Does it take longer than an hour?
Do you lay flat or is your head elevated at all?
What does it feel like to have your head immobile in the frame?

thank you so much, my appointment is October 2, the clock is ticking.
 
Sue

[MLB57]

Dear Sue--I am scheduled for a CONSULT with Dr Noren At NE gamma Knife Ctr/Prov Ri Sept 28 as I have re-growth of a 1 cm rt AN removed surgically 2001. Dr Noren is a world-renowned neurosurgeon who only does gamma. I have done HOURS or research on the web--I'd suggest you just plug in "Gamma Knife" and you'll find every hospital /center that does it and most will give you a blow by blow of what to expect. Now if you are scheduled for Gamma soon and you need yoiur questions answered, just contact  whoever will be doing the gamma treatment with your concerns/questions. They should get back to you!! Regarding how long you will be in the gamma machine, I can say from my research they probably won't know until after they see the MRI taken that AM and devise their "battle plan" for your treatment. Depends on the size, shape and location of the AN as to how many times you will go in and out of machine. I do believe they will give you a mild sedative but that won't knock you out, probably just put you slightly happily in lala land as let's face it, none of us are thrilled with al of this, but I am thankful that surgery isn't my only option.
  I'm sure you'll get some "real experience" stories, but just wanteed to add my two cents and to let you know I am anxious as well but realize this is not experimantal and if this stops the growth it will be great!!  My best to yiou--Mary from MA

[GM]

Sue,

I hope I can put your mind at ease a bit here...

Is it noisy?  No not at all...actually my doctor piped in classical music when I had my treatment.  Some places allow you to pic your own music when your having the treatment, so you may want to ask.  I kinda like the classical music, so I went with that.  They'll keep you overnight for observation (standard), and will give you a steroid treatment to help prevent swelling from the radiation.  I had the treatment on a Friday, came home Saturday, rested Sunday (your gonna be a little tired) and returned to work Monday.  The only people that knew were my supervisors.

Does it take longer than an hour?  My treatment took about 22 minutes total including readjusting the machine ( I had two targeted treatments)... so unless you nod off quickly...I don't think you have to worry about sleeping.

Do you lay flat or is your head elevated at all?  I laid flat on the table, I think my head was actually raised a bit if I remember right, but your not in a machine like an MRI.

What does it feel like to have your head immobile in the frame?  Well you have to stay immobile for MRI's as well so it feels about the same.  They put you "slightly" under (like taking a quick nap) when they attach the frame, I didn't feel a thing.  It's not really bolted to your head it's more like metal "pins" that go into the skin.  The sites heal completely so you won't even be able to tell where it was at.  The head frame locks into a another frame so you couldn't move your head even if you wanted to.  Afterwards my head was numb...mostly my hair...it felt wierd to run my fingers through my hair.  But that totally went away in a couple of days.

You can ask for a tour of the machine, and I would suggest that you do to help get rid of your nervousness.  My wife (then my fiance) went with me and she took pictures of the event

I hope this helps.

Gary

[sewnice50]

Mary, Thank you so much for your reply.  I am so sorry you have more to endure with this nasty AN.  I hope the GK goes ok for you. Sue

Gary, Thank you for setting my mind at ease.  I hate surprises and your description made me feel so much better about the upcoming event.  I see my Dr. Oct 2. I hope your doing well.
Sue
 

[Sue]

Hi Sue

One Sue to another...the GK isn't much to be concerned about...however, I do realize you have other problems to consider.  My GK was last April. In my case, I first met with Dr. Bader at Providence (with my hubby) for a consultation and tour of the facility where they show you what all they do.  I also got a DVD of the procedure that tells you what they do.  Then we checked in at 6 a.m. (yawn) and put us in the waiting/recovery room.  The nurse in charge (who really runs the place, I'm sure...) was very nice. She gave me the little white pill, and put cream on my head.  Oh, and, of course, you feel like a slob because, no makeup, no hair stuff, no metal so for me that means no bra (Yikes).  The cream numbs the skin, and the pill works fast, so that when the doctor comes in and they deaden the area more via a shot of something, you are getting pretty relaxed.  The needle was a pinprick of pain, which went away fast. Attachment of the frame was painless, just felt the pressure. I was in a wheelchair and trundled off for another MRI. The pill that I got makes you very relaxed, and you don't remember the day very well.  I was a bit disappointed, because I did want to remember it, as this was kind of interesting.  I took my music, but only remember hearing one song.  After coming back from the MRI I was put on the machine (I wanted my husband to take pictures of it, but he didn't) and then it gets really hazy.  I remember a few things, but mostly that time period is gone from my memory.  My husband said I was in there for over an hour. Yes, I was lying flat; no, not noisy, had the pill so didn't bother me to lock my head down.   But, I was not asleep, as such.  The doctors said I did "great" and that I was "having a good time". My husband said he heard laughter.  So, apparently I'm a happy drunk and I was also entertaining the crew.  Good to know, I guess, although I was really embarassed when I heard about it later.  Then back to the recovery room where the pill was wearing off. Somewhere in there they removed the headframe and check the pin sites. I had a little bleeding from one in the back and it dribbled on my sweatshirt. So don't wear anything you really love, you might get blood on it.  Then we went home!  We were home by 12:30 or so. I got on the phone to tell my family that I was okay, by husband went to get my prescriptions, and food.  I was starving, no breakfast!) I ate a Whopper with Fries, not caring a hoot about the stupid diabetes I have, then toddled into the bedroom, whereupon I fell asleep for the rest of the afternoon. So, for me, I wasn't kept overnight.  The nice nurse called the next day to see how I was doing.  The steroids I was taking had kicked into high gear and I could have climbed Mt. Hood, possibly Everest, I think!  Then as the week progressed, and the steroids were tapered off, I got the very common side effect of insomnia, and believe me, THAT was the worst part of the whole thing, for me.  Now, with all of that...I imagine that different facilites do things a bit different.  Your pill might not be the same as I took, and you might stay the night.  It was an interesting experience, and I'm sorry I missed most of it. Good luck to you.

Sue in Vancouver

[kbwright]

Hi Sue,
I had the gamma knife procedure in March of 2005. I feel that I am now through the entire experience, no more symptoms, no balance or dizzy problems. It took about 14 months for the symptoms to stop. I was told it could take up to 18 months for a full recovery. I do have some hearing loss and constant ringing in the affected ear.

To answer your questions about the gamma knife:
Is it noisy? Weird thing is you do not hear or see anything. I was even able to bring in a CD to listen to.
Does it take longer than an hour? I don't remember the timeline, maybe an hour+.
Do you lay flat or is your head elevated at all? You lay flat and your head is slightly elevated in the "harness".
What does it feel like to have your head immobile in the frame? You do not feel anything with the headframe. Did not feel anything when it was put on or removed, and it left no marks at all on my forehead. It did feel awkwardly heavy. I did take a few days off from work afterwards and slept alot. But I really could have gone back to work the next day.

Be sure to take a tour of the clinic where you will have the procedure. That really helped me feel more comfortable with the decision. It really was a strange, but painless procedure. Maybe a headache afterwards.

Best wishes,
Kim

[sewnice50]

thank you all for sharing your experiences.  I feel more at ease knowing all I can.
Sue