Gamma Knife "still nervous !"

[debisda1]

Hi, thanks for all the helpful advice..  Still very nervous...  Going on the 2nd of Oct. for my consult and to find out more about the Gamma Knife..    Is there anything I should be sure to ask the doc?  I would like to see the head brace up close before they put it on me....  Do the pins actually pierce through the skin?  Are you sure that you can't feel that at all?  My tumor is about 1 centimeter large so I am hoping for a short radiation treatment then probably over night at Univ. of Va.   It's a long way from my home so I'm hoping that it's not being done early in the a.m. Thanks for any and all advice I can get....          Debisda1   

[Sue]

Hi Again

No you can't feel the pins that help hold the frame into place. First they put a cream on your skin to deaden the area, then you get a shot of "something" that deadens the four areas further. Before they do all that you get the relaxing meds.  You don't really care what they are doing to you by the time they get to tightening up the frame. You can feel the pressure on your head, and that is all.  Their goal is to not hurt you. The next day the nurse in charge of the procedure called me and asked how I was doing.  She also did a short survey, and one of the questions is:  Were you in any pain, or was anything painful for you?"  No and no, for me. The question you might ask is this:  Will I be getting steroids for swelling following this procedure and when this causes insomnia (as it probably will!) can I take any sleeping pills to help me sleep?  If they say no, then  you will have to tough it out for a week, like I did, and if they say yes, then take the sleeping pill!  If they say you will not be getting steroids for swelling, then ask why not?  Don't let that frame scare you!!  Really. Trust me. 

[kat]

HI

The Gamma Knife treatment is nothing to be worried about . The  fitting of the headframe is the most uncomfortable part
and sorry to say yes the pins do pierce the skin but by that time you should not feel a thing since the local anasthetic will have worked by then .I am a wimp with needles so the actual local anasthetic was the worst part for me. The zap is painless
and soon over with. Everyone is different but in my case afterwards I had a very slight headache which disappeared after I had a rest . I had a feeling a bit like jetlag for a few days afterwards but no other ill effects . I was back to normal in about
three days . I felt a bit like "Is that it? " since it all felt a bit too easy to have worked . So far so good time will tell if it has worked but the odds are pretty good . I have not had any major problems since just a few dizzy spells and a short bout of headpain which was sorted with some anti inflammatory medication. It is now 17 months since my zap and I am due to have my next MRI scan in December .  

Regards Katarina  

[Mark]

Hi Debisda1,

While the GK is certainly a very effective machine for treating your AN, one of the historical drawbacks is the necessity of the frame to insure accuracy. Certainly the experiences of those who have done it is most valuable, but obviously everyone is different in their tolerances of these things. If that aspect is still bothering you I might suggest you look into Cyberknife as an alternative. CK is a technology advance on GK that eliminates the need for the frame while providing equivalent or better accuracy of dose to the tumor. It also allows for fractionation of treatments which some would advocate provides better nerve function preservation that one shot. The following link is to a couple of CK videos ( technology overview & Brain lesions). While principally intended to walk people through the CK experience , there is not a lot of variation from GK other than the frame process. That is shown in the first 5 minutes of each one so that may help you better visualize what it would be like with GK

http://www.cksociety.org/PatientInfo/radiosurgery_videos.asp

Again, either system can be equally effective with treating your AN, but if the accuracy is the same so that there is no use for the frame, I guess I've never understood the need to do it even with the best anesthetics.

Mark

[Windsong]

Hi Mark,

It's very good to see your post.

I watched it and during it wondered about a few things, however.

You know that mask that they put on? (really neat watching that part too).... i was looking at how it was placed over the face and then down to the table etc..... and somehow wondered what happens if a patient "loses" weight from one day to the next 3 or 5 days etc. (some folks can lose 5-10 lbs water or weight so to speak in one day... would this make that mask loose and would it affect the positioning of the patient? or does the robotic arm take care of those kinds of diffreences??? Would this affect the mm. accuracy?...only wondering as with gk for ans its mostly one day one set up and so on? so weight loss wouldnt matter anyway  there.... truly i wonder about all this technology and amazing advances.

amazing technology really this ck is......
thanks for passing this site on.

all the best,
Windsong

[Mark]

Hi Windsong,

I was just passing by today and thought I'd check in 

That's a great question and one I haven't heard before so all I can offer is some "off the top of my head" thoughts on weight loss and mask fitting.

While it's possible to lose 5-10 lbs in a short time , it usually would only occur with some extreme demand on the body. For example, I do triathlons and I think the most I ever lost on a hot day was 3-5 pounds ( unfortunately it was mostly water and came back in a few days  ) Even when I did a marathon I don't think I lost much more than that and I'm  pretty sure most folks going through treatment aren't doing any stressful exercise to create that much loss in a short time. 

Even if there was some reason for a dramatic weight loss I think it would have minimal impact on the head since there isn't that much extra / excess tissue to lose around the skull. So I think the amount of variability on the mask being snapped into the same location would be minimal. Ironically, the issue of replacement for daily treatments is one of the primary advantages of the CK over the other systems. All the other systems are basically "plot, forget and shoot". That is they plot the treatment from the CT scan and then the machine shoots to the targeted points. So, if the placement varies on the second , third day etc then the beams will be slightly off because the machine doesn't / can't adjust. This may only be a mm or so, but it is a factor in overall accuracy. The CK , on the other hand, uses active targeting of the AN during the treatment so if anything moves or is not where it was supposed to be it either adjusts or pauses to reacquire before firing a dose. So, if a scenario such as you suggest occurred with CK the machine would adjust as the mask just serves as a restraint  and is not critical for placement.

I think the bigger issue on weight lose would be for body radiosurgery since there is more potential variability with weight loss in that area. However, those folks using CK for non skull based tumors have fiducials placed around the tumor to enable targeting. More of an issue than weight loss is compensating for respiration as the tumors move during breathing and have to be tracked. That's not an AN issue obviously, but to your point it is amazing technology when folks with other tumors now have an option other than surgery.

Take care,

Mark

[debisda1]

Jennifer,
Thanks for the info.  Is Dr. Steiner at the Univ. of Va. ?  That is where the doctors at the Portsmouth Naval Hosp. in Va. want me to get the Gamma Knife treatment done.  Univ. Of Va. is about a 2 hour drive from Virginia beach where I live.  I have been hearing alot about the Cyber Knife Treatment also.  They say it is more accurate and the metal frame does not have to be worn.  That frame is worrying me.....  Maybe just the idea of screwing something into my head makes me want to faint !!  How is your husband doing?  Were there many side effects?  I also heard that you can lose hair afterwards.  I'm trying not to worry much but the stress level lately has been high.  I just recently lost my mom to a stroke and haven't dealt with that blow yet...  so this was a double whammy...  Any clues on relaxing or does the anxiety get worse?  Thanks for listening,
           debisda1

[GM]

I too had my GK at UVA... is Dr. Steiner doing your treatment?  Did you know he is the co-founder of the Gamma Knife?

UVA does a great job of keeping you informed of the treatment decisions, I felt very comfortable and confident of the entire staff.  Dr. Steiner likes to pump in classical music during the treatment.  They also have a gourmet chef that serves dinner the night that you stay there...I even had wine     My wife (then fiancé') stayed with me. 

I think you'll be pleasantly pleased with your experience.

Gary

[Windsong]

HI Mark,

Glad you stopped by....

It  is great isn't it that ck let's folks have treatment needed in the body and oh , yes, breathing and movement are de0finitely helped by placement of the fiducials....(as you said it is different for an An).

I watched all the videos and noted they have a couple of "hold your breath"  type scenes which made me smile as reminded me of an ordinary lung xray lol....(NOT that they are the same  )

It's wonderful that Ck is perfected enough to deal with areas affected by respiration. Some people are "deep breathers"  so I can sure see why a tracking system is useful.

Debi,

meet with all those who offer treatment... you will perhaps feel in your gut which way to go. So many here have spoken about that. Each case does end up being individual really.

all the best to you both,
Windsong

[Sue]

Hi Again,

Just to reiterate:   RELAXING MEDS

I do believe that every GK patient gets a little something to calm them down.  I remember very little of the actual GK procedure (sorry to say, as I thought this would be something interesting to remember) because of the pill they gave me.  Apparently, though, I was having a good time.  This was embarrasing to hear, because I don't remember  having a good time.  I guess I am a "happy drunk".  As of last April, GammaKnife was the only game in town. Since then, a Vancouver hospital has added CyberKnife to the choices now available. I imagine if I had gone to my doctor now, instead of last March, he would have scheduled CK.  However, I am happy with the GK I had and I have no regrets.  But I should tell you that there is residual effects on your scalp for  weeks after the treatment because of the local anesthesia that is injected.  I don't know why, exactly...It's just kind of weird.  However, pins in the head, a little pressure from the frame, weird scalp and a week of insomnia was more preferable for me than microsurgery.  But, if the frame is going to totally freak you out, no matter how reassuring we can be, then you might as well check out CK.  Maybe that will be a better alternative for you.  Really, good luck with your decision and with your treatment. The goal is to kill the AN - and how you do that is up to you.   

[windinthesails]

Hi Debisda1,
   I just went throught the Gamma Knife a couple months ago and totally understand your nervousness. I felt the same way, but honestly it is nothing to worry about. The most uncomfortable part is when they put the frame on, yes they do puncture the skin but they numb it for you, and mainly you will feel an increase in pressure. Then when they actually put you in the machine for the gamma knife, it is so quite that you can just sleep and the time will go by really fast. I did have a headache afterwards but I just slept it off on the hour road trip back home and was fine the next day. I hope everything goes well and if you have any further questions feel free.
 

[debisda1]

Hi there windinthesails,
You just had GK a few months ago?  I am reading so many posts about people who have had AN surgery, but not many that have had the Gamma Knife treatment.  Yes the head frame is the part that freaks me out the most but I haven't had my consult yet (Oct. 2) so I'm sure the docs will discuss it with me. Thay are saying that I will probably stay overnight at the Univ. of Va. after the treatment.  I live about 3 hours from there!  You said that you felt fine the next day?  Was there any pain where they put the frame on or any nausea? (I watched the video about GK on the Univ. of Va. website. When they took off the headframe the patient was bleeding a bit and they said there could be a need for stitches..)  I guess I'm just blown away by all this and it will be some time before I come to terms.  Thanks for the info and I'm here if you wanna chat.....
Debisda1       

[windinthesails]

Hi Debsidal1,
  In the consult, at least for me, they show the machine, the head frame and what the machine is suppose to be doing. When they put the head frame on me, they warned me about needing stiches too but it didnt happen, just a little band aid b/c it is like when you scratch yourself, you bleed a little bit.  I went to a place in Sacramento, CA and they didnt make patients stay overnight afterwards but for half hour to make sure you were ok, I did have someone to drive me home afterwards. I had mine in the morning, 7AM yuck, and when it was all done I just slept all day. I did feel fine the next day and actually went shopping b/c a friends wedding was the day after that. Honestly, before you have it done you will be nervous and worried. I know I was no matter how much ppl told me not to be, and it is perfectly normal. The whole thing does seem really weird but before you know it, it will be done and over and you can go back to life as normal. Keep me informed if you want about how your consult goes and everything.

[debisda1]

Hi there windinthesails,
Well, tomorrow Oct.1, is my consult with the neurosurgeons at the Portsmouth Naval Hosp. in Va. 
Getting myself ready for all the questions I will have for them.  I will ask about Dr. Steiner at the Univ. of Va. (where I am having the treatment done.)  Heard he is one of the best docs there.  I am not as nervous as I was when I originally got the news. Hearing from other people that had the Gamma Knife has made me a bit calmer.  I'll keep you posted after the consult, thanks for the chat.....         debisda1 

[ellenvig]

Hi,

I had GK a week and a half ago!  I did have a lot of nausea, pressure, and a massive headache while the frame was on, but, because of the local, the frame didn't actually hurt.  The headache and pressure went away once the frame was off, and I went on Decadron to control the nausea.  The back of my head is still sensitive today, and the front pin sites are only if I actually press on them.  I'm very sensitive to puncture, though, as where my IV was even still hurts.  I had no bleeding when the frame came off. 

I went to 2 neurosurgeons, and 2 radiosurgeons before making my decision.

Ellen