ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Pascale on October 29, 2007, 10:59:22 pm
-
but I need some enlightment....
For the treatment of an AN you either go with:
- CyberKnife
or
- GammaKnife
If that is correct, what is LSL, or Trylogy machines etc....are those machine names from CK and GK>???
I'm lost....
ANOTHER HUGE QUESTION.... if I choose the GK treatment, will go for a one time treatment and then monitor it for 6 months then 1 year etc???.I have mine booked for Nov 29th...But I thought, from what I read on the net, that with the GK treatment, patients went 2 times a week for 30 min or so...but then the lady at the San Diego Gamma Knife Center, told me it would be a one time deal, approx 5 hrs....
Is that right?? also, has anyone heard about the San Diego Gamma Knife Center (Part of UCSD - University of California San Diego).
Thank you sooooo much for replying. I just joined this forum after my mom found it. and I do see a lot of literature from all the posts but time is health!! ;D
-
Hi Pascale,
S'ok, no harm asking questions, easier than trying to find answers in the thousands of posts here! :)
GK and CK are radiosurgery machines, GK being a one shot modality, and CK being used in a fractionated (FSR) mode, ie. 3 sessions generally. Other radiosuregry machine are generally termed as LINAC (Linear Accelerators, if I'm correct on this) and are also used in FSR mode, depending on the facilities / hospitals. Could range from 5 to 25 sessions. To confuse the issue a bit, CK is also a LINAC but it works slightly differently as it's mounted on a robotic arm for flexibitlity, has a way of monitoring your position for accuracy, and has some other differences I won't go into here.
GK's five hours includes the time to set you up for the one treatment session. Not sure how long the actual session is, but others will be able to tell you, or the hospital.
Other options for treatment are of course surgery, but that's a different sort of thing, right! :) As for LSL I never heard of it, and Trylogy is another version of LINAC, again not 100% sure, as I didn't look into that.
By the way, CK (CyberKnife) and Trilogy are brand names, rather than technical terms. But they are different machines.
Monitoring: usually it involves 6 monthly MRI for the first year or so, or until the docs decide you can switch to a yearly MRI. For me, I had a yearly MRI for the past two years and monitoring for three years so far, will probably continue on that basis for another while, unless they tell me differently at the next follow up.
I wouldn't know anything about the SD centre, not because of them, but because I live on the other side of the planet. I had CK at Stanford though, which is an excellent hospital.
I hope I haven't confused you completely with this! :)
Ciao, Lorenzo
PS: I hope others will chime in and elaborate on some of this
-
A comprehensive answer for sure !
all I would add is the gamma is about 5 hours setting up
measuring etc etc - actual time in the machine is 20mins ish
it`s several shots - but in the one session
it is measured to 0.5mm accuracy
- the session is rather easier than a MRI scan
Best Regards
Tony
-
You're right; I rephrased my GK part to reflect the multi-shot nature of the treatment. Good point! :) Thanks.
I wonder, do they still use those bolt-on head frames for GK that can be rather uncomfortable? Or have they switched to something similar to the CK masks?
Lorenzo
-
Thanks for the answers:)
I got a bit confused with the whole machine names and all :P But I read it 5 times and got it....
So I guess there is no real way to say that GK is better then CK and so on....
Lorenzo: did you do a GK treatment? how is the tumor reacting? Do you hear a noise in your ear, similar to tinnitus? do you get some very acute pain behind the ear sometimes? that last for 10 sec or something? How is your hearing?
Sry for all the questions...I know people are different and will react differently. but I am really just curious...
I found out about the AN in Jan 06 and by the time I did the first MRI, one week later I lost 20% of my hearing. After 1 month, my hearing was back to 100%, which doesn't make sence to any of the doctors I talked to, as well as me.... I felt a loss of hearing again, but very little (maybe 2-3%) and tinnitus 7 months ago...And I started having some acute pain in the back of my ear, that comes and goes real fast ... ???
Anyway, just wanted to share my part ;D tks for reading.
-
Hi Pascale,
Yes, I thought the answer might be a little confusing... Glad you made sense of it.
I had CK, not GK. I felt more comfortable with it, and it had no screws in skull involved! Now THAT was a plus point for me! :) Anyway, that was nearly three years ago. Tumour swelled initially, then shrank back, and is now smaller than it was when diagnosed.
Yes, I have tinnitus for years at this stage. Got used to it.
Acute / sharp / short pains: had those after CK, and for me it was when the tumour swelled and the nerves were being stretched. I'd mention it to your docs.
Hearing is 75% down and the other 25% is more a nuisance than anything else. went down and extra 5% after CK, I presume due to the swelling.
No problem about the questions, feel free to ask. I have a blog about my CK experience, and from the time of diagnosis. Send me a personal message and I give you the address, if you want.
How big is your AN?
Keep asking questions, that's what we're here for, and how you can be informed and make good decisions! This is a wonderful place full of great and willing people.
Keep in touch.
Ciao
Lorenzo
-
Hi Pascale,
YEs, that's what doctors say. In fact, Dr Chang was the only one at the time of my pains to suggest it might be the nerves stretching due to some tumour swelling. There are so many nerves involved there, it makes sense that if they are being stretched, that they would act up. At least that's what I think. Ear infection? Well, maybe, I don't know. But a short sharp pain behind the ear and down my jaw would not be an inner ear infection to me, that's the kind of pains I had. I have to say, I had the same dismissal by doctors here. One of them even suggested that the black area within the AN (necrosis) had nothing to do with necrosis... oh right.
I tend to think that doctors don't believe if it isn't scientifically proven. For example you'll find that a lot of them don't believe that there are issues to face after CK or GK. That 'one can go back to normal right after it'. A lot of us can testify that that is not necessarily so. There certainly are effects from treatment, even if it is a so called 'non-invasive'. How many of us have come up against brick walls when it comes to relating cognitive issues, fatigue, temporarily increased symptoms, less stress tolerance, etc? A good few I would think.
frustration is part of this, a lot of the time. That's why this forum helps us, and greatly helped me, in dealing with post-treatment (and any other) 'stuff'. We understand each other and have been there. It might not necessarily be scientific, but we can relate and most likely one of us has had something similar to relate.
All this said, no treatment is without effects, certainly not surgery, but neither is CK, GK or watch and wait! One has to decide which treatment option one is most comfortable with, and go for it. Your tumour sound small enough to give the option of exploring avenues and decide what YOU want. This isn't an easy thing to deal with, we all freaked out by something or other. But we all also remembered that we are all different, and we all react differently. I had HUGE fatigue and cognitive problems for the first 6-8 months after CK, but they were lessening all the time, and I knew they were temporary. Others had no problems at all. No idea why, maybe tumour size / location, maybe their overall fitness level, maybe the moon was on the descendant, or somebody was watching over them. Whatever the reason, that is something we can't do very much about, and will be there regardless of what treatment one goes for.
The end result for me is that CK worked, I felt comfortable with it, have absolutely no regrets and would do it all again if I had to. I lost extra hearing, but 5% is not that much, particularly, as in my case, were hearing loss didn't make a difference, I was already down a big chunk so a bit more or a bit less made no odds to me. HEaring preservation wasn't a reason for me to choose CK.
Ok, sorry for the long rambling post, hope I didn't over do it! :) Keep asking questions and you'll get more comfortable with this as time goes on.
Ciao, Lorenzo
PS, nce pic of you! :D
-
HI again! :D
We are becoming regulars on this. An AN community in Orkut?? HUH? Ok, forgive an ignorant European less familiar with Orkut than Ballydehob, but where and what is Orkut?
I think you've made a good decision, no harm in waiting and exploring some more until you're totally comfortable with YOUR choice of treatment.
By the way, I have a blog about my CK experience, if you want to read it, send me a personal message, I won't post it here, I get enough spam as is!
Keep us posted and ask questions!
Ciao, and have a great day too.
Lorenzo
-
Hi Pascale,
Welcome to the radiation sub-section of the forum. :)
Like Lorenzo, I applaud your decision to cancel and reconsider. Feeling that you have made the right decision is so important, for your own morale, if not for your recovery as well.
My advice is to do CK if you can arrange it - it is just as good as GK, only better. 8)
Something to consider on the temporary hearing loss / ear pain / doctors don't believe it question: besides two major cranial nerves, the little IAC canal also carries a major blood vessel, which supplies the cochlea, or hearing organ. A little pressure on this vessel could easily induce a drop in hearing by cutting off blood to the cochlea. I had some vestibular lab tests done, which showed that my hearing nerve is still very functional, and that some of my hearing loss may be due to blood flow issues.
So next time you see your ENT, ask if "cochlear ischemia", the medical term for reduced blood flow to the cochlea, might have been caused by the AN, and produced a temporary hearing loss and ear pain. The doc will roll his eyes, and mentally swear that the "Internets" are ruining his business. ::)
Good luck with your quest.
Steve
-
nothing like keeping those docs on their toes... :D good one Steve.
-
Hi Pascale,
Welcome to the radiation sub-section of the forum. :)
Like Lorenzo, I applaud your decision to cancel and reconsider. Feeling that you have made the right decision is so important, for your own morale, if not for your recovery as well.
My advice is to do CK if you can arrange it - it is just as good as GK, only better. 8)
Something to consider on the temporary hearing loss / ear pain / doctors don't believe it question: besides two major cranial nerves, the little IAC canal also carries a major blood vessel, which supplies the cochlea, or hearing organ. A little pressure on this vessel could easily induce a drop in hearing by cutting off blood to the cochlea. I had some vestibular lab tests done, which showed that my hearing nerve is still very functional, and that some of my hearing loss may be due to blood flow issues.
So next time you see your ENT, ask if "cochlear ischemia", the medical term for reduced blood flow to the cochlea, might have been caused by the AN, and produced a temporary hearing loss and ear pain. The doc will roll his eyes, and mentally swear that the "Internets" are ruining his business. ::)
Good luck with your quest.
Steve
Once again, Steve and I mostly agree. I have seen the rolling eyes of thes docs and I ahve been told to stay off the internet...BIG mistake that was. I chose to listen to my docs here and had linac, BIG mistake when not in the hands of very experienced doctors and a machine that is dedicated only to radiating brains. If I had made an informed decision I owuld ahve chosen Gk and CK next. I like GK because fo the one shot deal...one day of stress and then onto recuperating. Just my personal opinion. But lsisen to Steve and the others who have had radiation, they are very informed.
-
I also am very confused about the difference between the CK,GK, or Novalis. What do you guys think about Novalis? I have not read much about it but I did have a consult and it sounds good.
Pascale, did you consult on Novalis? What do you think about it?
-
Linda,
Here are some threads on the CPSG site that might be of help to you re: machine comparisons
http://www.cyberknifesupport.org/forum/default.aspx?f=1&m=9530
http://www.cyberknifesupport.org/forum/default.aspx?f=1&m=8606
http://www.cyberknifesupport.org/forum/default.aspx?f=1&m=10679
Mark
-
I had the Novalis used on me and I would never do it again. I hope you look into other options and consult other doctors before going this route.
-
Hi Pascale,
You are not the only one. My hearing was "muffled" for over a month or 2. Then it totally cleared. Then some tiny tinnitus set on. I was told that it could have caused by "decompression" of the inner ear?! Who knows. The doctors don't all know.
I noticed you are in San Diego. So am I. Feel free to drop me a personal mail if you'd like. My CK treatment was a breeze. Now I am just going through swelling stage. I too had considered GK but dropped the idea once I learned about CK. There is also a CK center in San Diego, a few miles from my house. I opted to go with Stanford because at the time the SD CK center was too new and I wanted the best and most experienced team (Stanford in my humble opinion).
Mary
-
*runs in... give Mary BIGGGGGGGGG HUGGLESSSSSSSSSSSSSSS, blows smoochie, runs back out* :)
-
Debora, why would you never do the Novalis again? Curious as to what happened to you, I was considering this option.................
-
I am leaning toward CK and plan to have it done here within the next couple months. There is really no difference between CK & GK other than the head placement thing. CK is just a newer version to my understanding.
-
Linda, I sent you an email, let me know if you haven't received it. Deb
-
I am leaning toward CK and plan to have it done here within the next couple months. There is really no difference between CK & GK other than the head placement thing. CK is just a newer version to my understanding.
Yes, CK = GK for the most part. It does add more flexible beam positioning, and the ability to easily split a treatment into 3 or 5 sessions. There is some evidence that splitting up the treatment reduces hearing loss. I hope it goes well for you.
Steve
-
Hi Pascale,
FYI, I am someone who gets those stabs of pain, too. They are like jolts of searing hot knives , last only for moments, sometimes several jabs in a row, then they vanish. No one knows... Mine are usually in the front of my AN ear- about my top of my jaw. I cringe and jump everytime. They are fast. One time, I rocketed out of a deep sleep. These all happened before my cyberknife treatments, started increasing in the last few months, and I have had a couple since.
As for CK=GK. NO WAY. The procedures are not the same- one is relaxing enough that you could sleep through it, the other screws pins into your head so you have to wear a big heavy metal frame. One uses mega X rays to do the irradiating, the other iuses a radioactive isotope of cobalt. Do some serious research before deciding. I had 4 neurosurgeons read my MRI and audiogram and each gave me a different recommendation for treatment. You have to decide what's right for you. I opted for CK and although there is a new cyberknife center right here in Philadelphia (1 hr. from me), my husband and I chose to fly across the country to have Drs. Chang and Hancock and their expert team handle my case. I wanted experience... and Stanford University Medical Center had it in spades.
Radiation is radiation but there are different ways for it to be delivered. GK is fast- one day- lots of radiation in one treatment. CK is several days- usually 3 to 5- with a smaller dose delivered each day. F.S.R can be 25-30 days of fast zaps, real small doses. I don't know about the Novalis (sp?) but the Trilogy machine/procedure resembles cyberknife.
There is a TON of information out there (go watch the Trilogy in Connecticut webcast for a full explanation of that one- or U of VA's gamma knife procedure, or Stanford's CK.) You must be your own best advocate. Hang in there!
Wishing you good health,
Terry
-
Ok, back on here after a jet lag recovery from coming over to California.
Pascale, that slight disconnection with reality, not knowing for a moment what and where, a sense of having to reboot the system, slow brain in the mornings, all sounds familiar to me! Gets better with time though, thankfully.
As for me headaches, only when the weather changes or if I'm really tired!
All the best, Lorenzo