ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: hollo321 on August 16, 2023, 12:44:32 am
-
hey im leaning towards radiation rather than retrosig surgery of my 1.7 tumor since from what i read on this forum sounds like its better for hearing preservation, but another decision is what kind of radiation as im not so familiar of the benefits of one over the other. Im a musician so saving my hearing is my top priority.
Is one known to be better than the other in terms of hearing preservation?
-
I am in your shoes trying to decide between surgery and radiation. In my research my understanding is gamma and cyber are similar in the radiation delivered, they are simply two different machines from different companies. I am putting a matrix together with my findings, trying to understand the pluses and minus of all approaches. I am meeting a retired Chair of Radiation Oncology later this week and will specifically ask him your question.
-
I've had both (neither really worked well for me). But I've heard that GK is more precise...
~BM
-
Hi, I’m a musician too and had Cyberknife last October. With Cyberknife they could fractionate the treatment over 3 days, which they theorize helps preserve the remaining hearing. I retested after 6 months and so far so good, my hearing is unchanged from before treatment. One good factor for me was there was a space between the tumor and my cochlea, so they could avoid zapping the cochlea. Dr. Chang said the auditory nerve itself is pretty rugged.
-
Just ended a phone call with the Dean of Radio oncology and asked him the difference.
Both Cyber knife and Gamma Knife use the same basic technology and radiation. They differ in the manufacturer of the machine, the method of securing your head in place and how the source of radiation moves. CK uses a mask and GK uses a head set to secure the head in place. The CK radiation source (in the arm arm) moves to hit you from different angles and GK has multiple radiation sources to hit you from different angles. They both are capable of delivering each one and done and well as three three and done.
-
Hi, I’m a musician too and had Cyberknife last October. With Cyberknife they could fractionate the treatment over 3 days, which they theorize helps preserve the remaining hearing. I retested after 6 months and so far so good, my hearing is unchanged from before treatment. One good factor for me was there was a space between the tumor and my cochlea, so they could avoid zapping the cochlea. Dr. Chang said the auditory nerve itself is pretty rugged.
great news you still have your hearing :) im sure u were happy to be able to still perform/do what you love without a handicap, which is what im afraid of. If 3 zaps is safer think thats what ill try to get,
thanks
-
Just ended a phone call with the Dean of Radio oncology and asked him the difference.
Both Cyber knife and Gamma Knife use the same basic technology and radiation. They differ in the manufacturer of the machine, the method of securing your head in place and how the source of radiation moves. CK uses a mask and GK uses a head set to secure the head in place. The CK radiation source (in the arm arm) moves to hit you from different angles and GK has multiple radiation sources to hit you from different angles. They both are capable of delivering each one and done and well as three three and done.
thats interesting to learn they pretty much the same. Gamma so far what read and heard only do one treatment which not sure why they dont do more usually, as also what i heard from some is that splitting it over 3 rather than one can be safer and perhaps less risk of hearing loss. not sure, still trying to learn about this,
thanks
-
Just ended a phone call with the Dean of Radio oncology and asked him the difference.
Both Cyber knife and Gamma Knife use the same basic technology and radiation. They differ in the manufacturer of the machine, the method of securing your head in place and how the source of radiation moves. CK uses a mask and GK uses a head set to secure the head in place. The CK radiation source (in the arm arm) moves to hit you from different angles and GK has multiple radiation sources to hit you from different angles. They both are capable of delivering each one and done and well as three three and done.
thats interesting to learn they pretty much the same. Gamma so far what read and heard only do one treatment which not sure why they dont do more usually, as also what i heard from some is that splitting it over 3 rather than one can be safer and perhaps less risk of hearing loss. And also some say gamma is more precise. not sure, still trying to learn about this,
thanks
-
I had fractionated sterotactic radiation... in 2010. My AN was discovered in 2003 as 1mm. Tiny tiny tiny. It grew 1mm a year and 2010 I too had to decide which treatment to do. Oddly enough my brother discovered he had a AN at the same time as me. I live on the Jersey shore. Lots of Medical facilities to choose from. I visited UPenn and others and did a lot of research. The one thing that kept coming back to me was that you have a better chance to preserve hearing with Fractionated vs The Gamma Knife. Reason being Gamma Knife is one big dose of radiation that results in collateral damage to health tissue. Fractionated are smaller doses given over a period of time. Any exposure to healthy tissue is at a lower dose and the tissue has time to recover before the next treatment. I had to go five consecutive days for my treatment that lasted a total of 45 minutes each which included the prepping etc.. Here I am 13
years later with no issues other than the tinitus and some (not a lot) loss of hearing in my right ear. My brother lives in Rochester NY and he chose Gamma Knife. Lost his hearing in his affected ear. What I learned was that you need to search out the doctor who does the procedure you want. The expert at UPenn only did Gamma Knife. After meeting with him and based on all the research I did I decided that I wanted Fractionated. One of my questions to all of these guys was, " Does my Tumor make a good target for you to engage?"
-
I had fractionated sterotactic radiation... in 2010. My AN was discovered in 2003 as 1mm. Tiny tiny tiny. It grew 1mm a year and 2010 I too had to decide which treatment to do. Oddly enough my brother discovered he had a AN at the same time as me. I live on the Jersey shore. Lots of Medical facilities to choose from. I visited UPenn and others and did a lot of research. The one thing that kept coming back to me was that you have a better chance to preserve hearing with Fractionated vs The Gamma Knife. Reason being Gamma Knife is one big dose of radiation that results in collateral damage to health tissue. Fractionated are smaller doses given over a period of time. Any exposure to healthy tissue is at a lower dose and the tissue has time to recover before the next treatment. I had to go five consecutive days for my treatment that lasted a total of 45 minutes each which included the prepping etc.. Here I am 13
years later with no issues other than the tinitus and some (not a lot) loss of hearing in my right ear. My brother lives in Rochester NY and he chose Gamma Knife. Lost his hearing in his affected ear. What I learned was that you need to search out the doctor who does the procedure you want. The expert at UPenn only did Gamma Knife. After meeting with him and based on all the research I did I decided that I wanted Fractionated. One of my questions to all of these guys was, " Does my Tumor make a good target for you to engage?"
thats good u still got ur hearing. not sure fractionated 5 treatment is something thats commonly done now adays as mostly from what i read so far is either gamma knife or 3 treatments on cyber. did you do that with a cyberknife machine or something else? The only neurosurgeon i saw so far said gamma knife or surgery and waiting to see another doc soon. Did your brother already have bad hearing loss before and loose his hearing completely right away after the gamma knife? or did he loose it slowly over many years post treatment?
thanks
-
I had fractionated Cyberknife (3) and my hearing is good after 4 years - actually listening to a podcast as I type this.
-
I had fractionated Cyberknife (3) and my hearing is good after 4 years - actually listening to a podcast as I type this.
also good to hear :)
the more i read here the more sounds like fractionated is the way to go
-
My procedure (CK one treatment) was completed last Friday morning. Friday was the only day when I stood up quickly, I knew my next move was to sit down quickly. That happened one time. I was a bit dizzy Friday and Saturday. Long story short Saturday I drove to Charlotte (2.5 hours), picked up something for my son and while we were there, I went shoe shopping with my caregiver. I guess South Park is a nice mall. All I can say it is big. I walked almost three miles stumbling a few times but never falling. Then I drove home. I have since returned to all my normal activities but remain a little wobbly at times. Then again is in only 5 days post procedure.
Radiation was as advertised very easy on the body. I had limited hearing in my left ear before the treatment and still have limited hearing, so I cannot weigh in on that.
Stay AN Strong as you continue your journey,
Dan
-
Hollo321,
I had Gamma Knife treatment in March 2022 to treat 18mm AN on the left. I chose GK due to its average achievable radiological accuracy of 0.15mm. My oncologist has advised me that that GK is the gold standard for radiation treatment and I was sold on his marketing ;D
Lost my hearing already prior to the GK so nothing to loose anymore.
The fitting of the head frame is not comfortable although they fitted me with a lightweight plastic one. I had facial spasms as side effect 6 months post GK but it healed itself after 9 months.
Overall I was very happy with my decision as the AN has now shrunk by 2-3mm, 17 months after the GK treatment.
Comparing CK and GK clinical accuracies:
https://www.rwjbh.org/rwj-university-hospital-new-brunswick/treatment-care/gamma-knife/for-physicians/#:~:text=Comparing%20Accuracy&text=The%20second%20is%20radiological%20accuracy,years%20on%20189%20installed%20systems.
Good luck to your decision and keep us updated on your AN journey.
-
DodgeAU, Great news on your shrinkage and thank you for the linked to the difference between CK and GK. I found it very interesting and plan reading the references (after vacation). do you have any more research on this topic you can share.
-
Thanks DanFouratt, hope you are having a great vacation!! unfortunately I do not have anymore research on that topic. I only did few research in the beginning when I was in wait and watch while trying to decide what treatment was best for myself. I try to avoid reading too much articles. The more I read the more I become anxious ;D
Let us know if you find interesting data on the references which could help others in their decision making..