GK Consultation

[Sefra22]

I had my initial consultation with Dr. Noren in Providence, RI yesterday to discuss the GK treatment option. I feel really comfortable with this treatment, and am scheduled to be zapped on March 14.
I am so glad that I took the time to research all the treatments available to find what was right for me. I didn't want to use up all my vacation time in recovery, which I would have had to do with surgery.

I learned a few things from Dr. Noren yesterday. He told me that GK can be administered more than once if necessary. I told him that I had read that was not an option for GK, but that it is for CK. He said something like, "I guess I'll have to write another paper on that to get the word out". 

I also found out that my tumor is acutally bigger than I was first told. He told me that most radiologists only measure the the rounded part, and not the "tail" of the tumor. Initially, I was told it was 15mm X 17mm. He said it is actually 16mm X 23mm when you include the "tail".

I got a tour of the facility, and they showed me the headframe. I don't look forward to it being screwed into my head, but to be able to have this over with in one session is what sold me, especially since I have to travel out of state for any treatment other than surgery. It was also nice to know that I will only be given steroids during the treament. I was told my forehead will be swollen at first, but should look normal after a  few days.

[Mark]

Dr. Noren is one of the most experienced and recognized GK doctors in the world. He is certainly an excellent choice for someone considering GK treatment.

My understanding from what articles I've read is that he is also one of the few who has utilized the GK in a fractionated approach. However, the answer as to why it is not done more commonly was contained in the bottom of your post:

I don't look forward to it being screwed into my head

It is certainly technically possible to program the machine and maintain target accuracy with GK over several fractions. However, to allow the healthy nerve DNA to recover doctors will typically space treatments between 12-24 hours. Most people would not be comfortable wearing the head frame over a two to three day period. ( unless you're into S&M or enjoy valium or vicodin  ) So the reason it is not done is more related to comfort than technical capability of the machine. CK, since it doesn't require the head frame but can still deliver the same or better accuracy over multiple treatments than GK does not have the discomfort issue.

Mark

[GM]

The head frame was not that bad…  they put you under for the mounting part and wake you back up…wasn’t bad at all.  My head felt a little numb at the top crown for a few days as the anesthetic left my system.  Felt weird to comb my hair.  No swelling at all from the mount sites (four total…two (2) in back at the base of the skull and two (2) just into the hairline in front).  They healed without a trace that they were there at all.

Best wishes for a successful treatment!

GM

[Sue]

Hi Sefra:


When I saw the CD that they sent me to explain the procedure and the headframe part came on, I thought, "Jeez, Louise!!"   Now that it is over and done, I understand how scary it looks, but I can assure you that it looks much worse than it is.  They put antiseptic cream on your forehead and in the back of your head where it will be.  Then I was given a pill that relaxes you and puts you into LaLa Land. I was given the shots into my forehead and back of the head. I felt the pinprick of pain from that, and then that part was over.  That numbs you up pretty darn good.  They put on the headframe and I only felt pressure when it was being tightened.  One side was a little worse than the other for the pressure.  There was only mild "uncomfortableness" associated with putting that thing onto my head.  And I was in LaLa Land and didn't really give a rip what they were doing at that point.  This drug makes you compliant and you are "awake", but you don't remember much about the procedure afterwards.  I was a bit disappointed in that, because that was pretty interesting, and I wanted to remember it.  My husband heard laughter and the doctors said I was "great" and that I "was having a good time".  Hmmmmmm.  I was embarassed about that!  Apparently I'm a happy drunk.  Now, what your facility does might be entirely different, but I'm under the impression that most GK patients get some kind of happy pill to relax them.  They don't want you to get all settled into that frame and bolted down and then freak out on 'em.  Not good. Best to remain calm and still when getting nuked.  Then it was over, the frame taken off and I did have a little bleeding from one of the pin sites in the back and dribbled blood on my shirt - so don't wear anything you really love.  I came out of my fog, and my husband and I toddled on home.  He left me on the couch and ran to get my prescription and some Whoppers and fries for our lunch.  I was hungry and really didn't care if I ate healthy or not. I'd just had radiosurgery, for cryin' out loud!  I wanted junk food.     I talked to some of "my people" on the phone and then took my pills after we ate lunch and headed for my bed, whereupon I zonked out for the afternoon.  Totally, completely, no dreams, unconscious-like zonked out.  Then the decadron kicked in and the next day I FELT GREAT!!! Zowie, wowie. I didn't feel sick or get dizzy or anything.  I could have climbed Mt. Hood.  I was on a Decadron High!  Then I came slowly down from the steroids and by the end of that week it was another story. I was so tired because of the insomnia caused by the steroid.  That was a loooonnnnng week for me.  You might ask if you will be given steroids and if so, is it okay to take any sleeping aids.  And yeah, you get that head feeling weird for a few weeks. It eventually goes away. 

Good luck to you and best wishes for a speedy recovery.

Sue in Vancouver

[macintosh]

Very interesting to read GM's and Sue's experiences. I had radiosurgery at Shands Hospital at U. Florida last week. They only gave us a light valium and local anesthetic, so I was wide awake and the headframe hurt a LOT (especially getting it screwed on). But then there's no recovery time. I had a ten minute treatment at noon, walked out of the hospital, could have driven home, and was able to take the dogs for a three mile walk at 3 pm the day of the treatment. It was like nothing happened except for the little dots on my forehead. So it did hurt, but it was over quickly.

[Sefra22]

Mark: I would definitely consider CK if there was a place closer to home where I could get the treatment. Since I have to go to Boston or Providence for GK or CK, I chose the option where I can have it done in one session for convenience and to keep expenses down.

Sue and Macintosh: I have to spend the first night after treatment in the hospital, you both got to go right home?

[Mark]

Sefra,

I'm sure you will do fine having GK treatment with Dr. Noren. There is certainly no reason to incur significant cost or inconvenience pursuing a CK machine as I'm sure the outcome will be excellent with GK. My only point in posting was to comment on Dr. Noren's reference to fractionating treatment with GK. As several folks have posted, there are a range of opinions on the GK head frame ranging from unpleasant to "no big deal". To my knowledge, nobody who has had GK in this forum went through an FSR protocol and I think there would be a big difference wearing a frame for 24-48 hours ( how would one sleep with it on?). So as long as you're comfortable with the one dose protocol, the GK will give a great outcome.

Best wishes,

Mark

[macintosh]

Sefra--

I literally walked out of the hospital about fifteen minutes after I got off the table. I guess different places have different levels of risk management.

Mac