GK probably - Rochester, MN

[Joey]

    Okay, even if I am a new kid, I've read enough here to know I can (politely) tell you to get back on task!  This is my proverbial two cents:  can anyone explain the backward loop cast on?  HA!  Okay, that was my attempt to lighten mood.  I have received my itinerary for Mayo for the day before the GK treatment:  on 10-1, I meet with the MRI people for an interview, the radiation oncologist, have a hearing test and see the neuro guy.  I sense that my hearing levels are changing right now - yesterday I really felt like I am losing hearing again, feels like someone is stuffing cotton in there!  Today it may be better, but I'm not real sure.  The effects of the Prednisone - I was given a huge dosage in July - could the effects be wearing off and the tumor gaining weight again?  Our weather is definitely changing too, becoming dryer and cooler, so not sure if this has any effect on feeling "stuffy" there.  Not that this is going to change my mind about having GK.  I've also read enough here to realize the symptoms can and will change at the drop of my knitted hat.  On the brighter side, I was in my brother's sailboat Sunday, and I did well balance-wise, no problems.  - Joey

[Nancy Drew]

Hi Joey,

Congrats on making your decision to have GK.  The decision process is hard, and I am set to have GK in mid-Sept.  I had some confusing rounds with the docs about "what would you do if . . . ."  My AN doc said he would do it.  The second opinion doc said he would W&W.  The third doc told me the pros and cons of all of the treatments, and then he said, "your decision".  My new AN doc is the one who said "your decision".  I think the fact that he gave me permission to make my own decision gave me a sense of control that I needed.  The other docs just made it more confusing for me.  However, I know some people would find it easier if their doc told them right up front what to do.  Of course, my AN is very small, and I am not having a lot of bad symptoms so I have more choices.  In Jim's case, he didn't have a choice since his issues were different.  In the end, this is how I came to my decision to have GK. . .  I changed over to the AN doc who said "your decision" first of all.  Then I met with the radiation oncologist, and neurosurgeon, who are members of the GK team, and then the nurse gave me a tour of the GK center. The radiation oncologist gave me the facts about radiation related issues so she wasn't really in the "what to do" loop.  So. . .   What really put it in the bag for me was when I met with the neurosurgeon who I saw last.  He gave me the same pros and cons and the "your decision" thing like my new AN doc did, but it seemed like the pros just stood out more to me.   As I left the examining room, I looked at the neurosurgeon over my shoulder and the words just came out, "I'm gonna go ahead and have GK".  It seemed so simple to say those words, and I feel like that was my "gut" speaking to me.  I am satisfied with my decision, and I will feel even more satisfied once I get my exact date which I was told should be mid-Sept.  In my opinion, if the AN is growing and/or causing problems, it is best not to ignore it.  I was in W&W mode for awhile as you can see from my signature.  While the AN was content to sit there and do nothing I was fine with W&W. Now that it wants to grow and is starting to bug me, I can hear it loud and clear saying, "Don't ignore me.  Do something now."  I had to really struggle to hear that AN talking!  So, this is how the process had been for me.  Different for everyone, and a personal choice about which treatment to go with. And, I have been told here by a very wise person that you do not have to explain your decision to anyone.  Best wishes to you Joey, and I hope to read your positive post GK update after I post mine.

Nancy  

[Nancy Drew]

Oh.......I forgot to add!  Once I told the neurosurgeon that I was gonna have GK, he responded back, "That is what I would do!"  I am sure a lot of doctors have to "bite their tongue" because they know what they would do, but they also know that some decisions are best left to the patient.  Afterall, we are the ones who have to live with the outcome.

Nancy

[Joey]

  Hi Nancy, looks like we'll be strutting together into the GK sunset.... I am having mine on Oct 2nd, and I'll be seeing all the experts on the 1st.  I am impressed (and incredibly jealous!) that you've had the full tilt tour already.  This doesn't even seem real to me yet, but it soon will.  I know exactly what you mean about the voices talking to you - and I really didn't have much hesitation in making my decision.  Watch and wait was not an option presented to me, and I am anxious to be on with it.  We will have to compare notes, that is for sure.  Where are you going for yours??  Good hearing from you and let's keep our morale up.  Regards, Joey 

[Nancy Drew]

Joey,

You beat me to the GK table.  They said mid-Sept, but I got the call today, and they said Oct. 7th.  So, you will have to post your notes first.  I am having mine done at Swedish Gamma Knife Center in Denver.  How about you?  Maybe you can call them up and tell them you want a tour sooner to ease your mind.  I had some more questions to ask after my tour, and I called up the nurse and she met with me the next day to answer them in person.  However, I did ask to talk to her in person otherwise she might have just answered my questions over the phone.  From what I understand, the nurse is the "go to" person, but it might be different in a larger treatment facility.  Best wishes and congrats on your decision and getting your date set up.  We will definitely march forward into the GK sunset, and we will come out of this just fine.

Nancy     

[Joey]

   Happy Friday Nancy!  You are right about the nurse being the main connection - I have Marina's (Dr. Link's nurse) voice mail and she urged me to leave a message whenever I liked, which I have taken full advantage of.  I am thinking a tour might be a good idea, too.  I'm actually getting excited about taking the step and getting this done - so I can get back here with some positive reports.  My major fear at this point is the application of the headframe, and Marina assures me it won't be so bad and that the frame is in place within 5 minutes.  Of course, there are also posts about people reacting to removal of the frame/screws.  I am hoping that whatever mild sedation they use - will take the edge off sufficiently.  (Bring on the "I don't care" pills!)  I still wake up and I'm glad about my decision to go forward, and the only voices in my head now are the positive, uplifting ones!!!  PS:  I was thinking, as I was drifting off to sleep last night, the ringing in my left ear was sounding like the lake or marsh after dark, complete with crickets and bullfrogs.....    Later, Joey

[Nancy Drew]

Hi Joey,

Me, too, I am feeling good about my decision and ready to get it done and over with.  When I went to see the nurse the last time, she let me put the head frame on so I would know how it feels as far as weight and position.  It really didn't seem that bad.  It is made from titanium, and I think she said it weighs 6 pounds.  You might want to see if you can try it on as well.  As for them screwing it in and taking it off, the nurse said they numb the areas before putting it on.  She also said they give you an ativan in advance of having the head frame put on.  She said if I needed more sedation they could arrange that also.  While in the GK machine she said they couldn't put me completely out, but they could give me something which would cause me to have amnesia.  I am cool with that option.  In fact, when I saw the nurse the second time, the sedation part is the only clarification I needed.  Once I got that info, I felt a huge sense of relief.  I really do feel that the GK team wants this procedure to be as relaxing and comfortable as possible.

My tinnitus seems to be getting louder lately.  I tend to thiink it is trying to reassure me that I have made the right decision to have GK.  Mine sounds like crickets, and I have heard so many people describe it that way.  My husband has tinnitus in both ears, and he says his is crickets also.  I haven't had the lake experiences you describe.  I have a sound machine that I bought many years ago thinking it would help with my insomnia, and one of the sounds was the crickets, bullfrogs, and such, and that just drove me crazy.  Hopefully you are tollerating your tinnitus.  I didn't start having tinnitus until a couple of months ago.  I was out on a walk, my ear started hurting, and by the time I got home the tinnitus started, and it has been constant since.  I was hoping I wouldn't get that symptom.  It doesn't bother me too much though.

Take Care, Joey,

Nancy

[Rivergirl]

Nancy and Joey, you both sound so upbeat and positive about your decisions...it is great to hear you.  I feel like I don't have to make any decisions until my first follow up MRI in Oct, like deciding is for everybody else not me, sort of like maybe it isn't real.  Anyway good for you guys, I am cheering you on from my little corner of the world (NH).