Author Topic: Gamma vs. Cyber  (Read 9934 times)

mandihester

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Gamma vs. Cyber
« on: August 23, 2016, 05:23:23 pm »
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. 
AN right side found August 2016- grape size
Retrosigmoid microsurgery October 2016
Before surgery- minor hearing loss, major balance and dizziness issues.
After surgery- severe hearing loss (it fluctuates), no dizziness, minor balance issues

JML

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Re: Gamma vs. Cyber
« Reply #1 on: August 23, 2016, 06:11:51 pm »
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

mandihester

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Re: Gamma vs. Cyber
« Reply #2 on: August 24, 2016, 06:32:37 am »
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. 
AN right side found August 2016- grape size
Retrosigmoid microsurgery October 2016
Before surgery- minor hearing loss, major balance and dizziness issues.
After surgery- severe hearing loss (it fluctuates), no dizziness, minor balance issues

Blw

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Re: Gamma vs. Cyber
« Reply #3 on: August 24, 2016, 02:01:58 pm »
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.

mcrue

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Re: Gamma vs. Cyber
« Reply #4 on: August 24, 2016, 02:33:07 pm »
I found Dr. Sheehan through BLW's story here on the forum. Very happy with my decision so far.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

JML

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Re: Gamma vs. Cyber
« Reply #5 on: August 24, 2016, 06:09:04 pm »
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!

john1455

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Re: Gamma vs. Cyber
« Reply #6 on: August 25, 2016, 11:43:09 am »
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.
Diagnosed with 19x16x19mm cystic AN right side on 7/2013
MRI on 3/2014 showed AN increased to 21x20mm
right side 70% hearing loss, tinnitus, balance issues
CK at Stanford completed 3/21/2014 (3 sessions)
Dr Steven Chang and Dr Iris Gibbs

mandihester

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Re: Gamma vs. Cyber
« Reply #7 on: August 25, 2016, 01:02:07 pm »
John1455,
It looks like your 2 years post CK- how are you doing now?  What were your side effects from the treatment?
AN right side found August 2016- grape size
Retrosigmoid microsurgery October 2016
Before surgery- minor hearing loss, major balance and dizziness issues.
After surgery- severe hearing loss (it fluctuates), no dizziness, minor balance issues

john1455

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Re: Gamma vs. Cyber
« Reply #8 on: August 26, 2016, 02:07:02 am »
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.
« Last Edit: August 26, 2016, 02:18:56 am by john1455 »
Diagnosed with 19x16x19mm cystic AN right side on 7/2013
MRI on 3/2014 showed AN increased to 21x20mm
right side 70% hearing loss, tinnitus, balance issues
CK at Stanford completed 3/21/2014 (3 sessions)
Dr Steven Chang and Dr Iris Gibbs

mcrue

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Re: Gamma vs. Cyber
« Reply #9 on: August 26, 2016, 02:58:51 am »
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.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

DadwithAN

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Re: Gamma vs. Cyber
« Reply #10 on: August 26, 2016, 04:42:39 am »
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.

mandihester

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Re: Gamma vs. Cyber
« Reply #11 on: August 26, 2016, 06:42:07 am »
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.....
AN right side found August 2016- grape size
Retrosigmoid microsurgery October 2016
Before surgery- minor hearing loss, major balance and dizziness issues.
After surgery- severe hearing loss (it fluctuates), no dizziness, minor balance issues

DadwithAN

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Re: Gamma vs. Cyber
« Reply #12 on: August 26, 2016, 08:01:41 am »
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?"

mandihester

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Re: Gamma vs. Cyber
« Reply #13 on: August 26, 2016, 12:39:51 pm »
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. 
AN right side found August 2016- grape size
Retrosigmoid microsurgery October 2016
Before surgery- minor hearing loss, major balance and dizziness issues.
After surgery- severe hearing loss (it fluctuates), no dizziness, minor balance issues

PaulW

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Re: Gamma vs. Cyber
« Reply #14 on: August 26, 2016, 04:20:30 pm »
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
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!