ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: mandihester on August 23, 2016, 05:23:23 pm
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How did you all decide between gammaknife and cyber knife? What were your biggest deciding factors? From my research, there isn't much difference in outcomes although cyber knife being newer, there isn't as much collected data.
I have a grape sized AN and gamma knife was suggested by my first neurologist visit. I am waiting for a 2nd opinion.
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Hi mandihester. I had decided to have CK only because I wanted to avoid the head frame used with GK. I'd read accounts of people who had a lot of discomfort with it so I thought I'd go for the mask used with CK instead. But....long story... I ended up having GK at Wake Forest which is closer to my home than the CK place - and I'm very glad I did. The frame installation wasn't bad at all - and I had no meds other than the numbing of the four pin sites. (Some people get pain and/or other meds). I don't know whether how the head is secured (frame vs. mask) is an issue for you but others on this site have said, and I agree with them, don't let the headframe be the only thing to keep you from having GK.
Best wishes to you for a very successful outcome.
Janet
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Thank you for your response. If you don't mind me asking, what made you change your mind to get GK, other than the proximity to your home? Honestly, right now, my only deterrent to GK is the head frame.
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I initially preferred CK because it was new, I could get it done at Stanford with arguably the best guy in the world, and the absence of a headframe was a minor point, but attractive. However, there was suggestion that my AN involved the facial nerve, and no one thought surgery was a good choice. After extensive research I chose GK because the data is vastly more extensive, and the outcomes for tumor control and facial nerve function were outstanding. There does not seem to be much difference in the two, but I went with the method that had a longer track record of success because I didn't think I had much room for error.
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I found Dr. Sheehan through BLW's story here on the forum. Very happy with my decision so far.
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Thank you for your response. If you don't mind me asking, what made you change your mind to get GK, other than the proximity to your home? Honestly, right now, my only deterrent to GK is the head frame.
I don't mind any questions at all. Trying to keep this story short for you, I had decided on CK and had already had the consultation, but when I called the doctors office to say I was ready for treatment I had to leave messages and nobody ever called me back! I gave up and decided to go with GK and I believe it turned out to be for the best. Not everyone has the same experience with the head frame but honestly for me it wasn't bad at all and if I'd known it would be like that I'd have gone for GK from the start based on the many years it's been in use.
Btw, if you see photos of someone wearing the headframe it looks like the pin sites would leave good sized holes in your head when they are actually very very small, about the size of pencil lead. That's all. And they heal quickly.
Best of luck to you, mandihester!
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I chose CK over GK because my online research indicated that fractionated doses seemed to better preserve hearing, I wanted the least invasive procedure performed and did not like the idea of pins of a head frame screwed into my skull, CK appeared to be a more state of the art technology, and one of the best and most experienced CK doctors and CK facilities (imho) was in my backyard at Stanford. Newer techniques will undoubtedly not have as long a history or track record as older procedures but it makes no difference to me whether a procedure has been around 50 years or 25 years as long as it has a successful and proven track record. In my eyes, I feel choosing a technique with a longer history may be safer but will also deny oneself of what may be the best or more state of the art procedure.
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John1455,
It looks like your 2 years post CK- how are you doing now? What were your side effects from the treatment?
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I feel exactly the way I did prior to CK. I have the same symptoms (tinnitus, disequilibrium, hearing loss) after CK as before and they have neither improved nor gotten worse. I get a yearly audiogram and MRI at Stanford and this will be a lifetime event. On a scale of 1 to 10 with 10 being the worse, I am at a 3. My memory has gone to pot but that may be partly due to my age (I'm 67) but I'm sure my AN plays a significant role also. So to answer your question regarding side effects, I had none except for the first week immediately following CK - my symptoms got worse but slowly got back to baseline afterwards.
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My memory has gone to pot but that may be partly due to my age (I'm 67) but I'm sure my AN plays a significant role also. S
I'm 42 and I've also noticed profound short-term memory loss post-Gamma Knife treatment. I also suffered fatigue, blepharospasms, transient balance issues while showering, constant tinnitus (pre-existing) and dramatic decline in hearing loss/word recognition.
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My dad just had GK on Tuesday.
He had one opinion with GK and one with CK.
The deciding factors for my parents were:
the GK was closer, they liked the doc better and they liked the idea of it being done all at once.
After the fact, we wondered if 5 shorter treatments would have been easier rather than a 73 minute GK session. But the CK was 40 min away. I dont know if my dad could have done it for 5 days.
Also do not let the head frame deter you. My dad did well with that. Also a mask is worse for him than a head frame. His eyes are swelling from the medicine. And his scalp is sensitive.
Hope this is helpful to you.
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John1455- one of my worries is keeping my symptoms as is. Some days are definitely worse than other, especially on dizzy days. I struggle to function on those days, and I have a 3 year old, so it makes playing with him after a day at work very difficult....:(
Thanks DadwithAN for sharing. It does help knowing what others are going or have gone through and why they chose the treatment they did.
I have an appointment to talk about about Gamma Knife this coming Monday. The lady was ready to schedule the procedure when she called to schedule the consult. I told her I wasn't ready to make that decision and that I was still looking for a second opinion. Hoping I get some calls today.....
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At both opinions, the people were ready to schedule right away.
My parents were like "Can we have some time to process all the information?"
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At both opinions, the people were ready to schedule right away.
My parents were like "Can we have some time to process all the information?"
Yes absolutely!! That is exactly how I feel.
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Any long term radiation people want to add to my comments?
Before radiation, I was dizzy, and felt disorientated by the hearing loss and balance issues etc. Then I had radiation and I had all of the same but everything got worse. Around 12 months I was about the same as pre radiation, 24 months was quite a bit better and by 36 months I was back to normal. For those that are 36 months post radiation, how do you feel? My hearing improved back to near normal after radiation, I have just been snow skiing in New Zealand so balance is good. I am now 6 years post CK and life goes on like it did before. I have lost some hearing in the high frequencies in the last 2 years Apparently my hearing is similar to an average 80 year old male. Not great but works fine with a hearing aid.
I am 52
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PaulW- thanks for sharing! That is definitely encouraging and I'm so glad you are doing so well now!
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I had CK in one-session similar to GK but without the invasive mask. I chose CK over GK because I read that the drill sites of the GK mask can get infected. It sounds like the whole GK treatment requires a full day for prep, while the CK prep is done 2 days prior to treatment, it was simple and fast.
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It actually takes 5 minutes to put the head frame on. Infections can happen with any break in the skin and are not really a big problem. They disinfect very well. It's not really a big issue, though in my case a pin was close to a nerve or blood vessel and the anesthetic wore off after awhile. I was darn glad to get that thing off. They put it on at 7:00 am, and I walked out of the hospital around noon.
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I had CK in one-session similar to GK but without the invasive mask. I chose CK over GK because I read that the drill sites of the GK mask can get infected. It sounds like the whole GK treatment requires a full day for prep, while the CK prep is done 2 days prior to treatment, it was simple and fast.
just to be clear, there is no drilling involved in the GK treatment process. Yikes!
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I thought the pin sites had to be drilled in???
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I'm not sure if you're kidding? In any case no, from all of us GK alums out there believe me there is no drilling. The pins are not screwed into your head either! :o The head frame is put on your head and positions of the 4 pins are marked. They numb those small spots with numbing cream and novacain so you never feel the pins. The pins are then tightened so that the head frame does not move on your head. It does break the skin however and they put band aids on afterwards. As others have said, the head frame is a non event for most people. Which treatment option is up to you but, seeking out opinions from very experienced teams is standard advice here. Where are you located?
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(http://28212.vws.magma.ca/reproduction___comic_book_cover___three_stooges___1961___dentist___small.jpg)
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Well that is a relief then! I'm fairly certain that I read on one of the hospital website sites that they drilled the head frame in.....I feel silly now! :)
I remember thinking, how barbaric is that!!!
I live just outside of Macon, GA. My original referral was to Augusta, GA, but I didn't go because I have an appointment this Friday at Emory in Atlanta.
ANGuy- this is definitely similar to what I was picturing in my head about the frame!