A question on Gamma Knife Procedure

[mary07]

I have been seeing doctors in Philly at the Jefferson University for a couple of months now .I have decides to
do the Gamma Knife but there are two way of doing it one is once and done the other
is everyday for  5 wks Mon. threw Fri. the way I understand in the 5 wks  they give it
in small amounts which is to help with preserveing  my hearing which I still have . I'm looking for
people  who  have  gone threw this to share there experience on how they did with each way of
doing it. Now the doc tells me they only do the 5 wk plan  in Boston and Philly Pa. The decisions
are not easy  having  AN . Thank you for your time and have a good day.
                                                              Mary

[BeJoi]

Hi Mary,

I'm sorry to hear you have an AN but glad you've found this site.  I am fairly new too.  From what I have learned, Gamma Knife cannot be divided into smaller fractions.  The therapy that your doctors are talking to you about is actually fractionated stereotactic radiotherapy and it's usually done with another machine, such as the Trilogy System.  This way of treating ANs is fairly new but there is some evidence that it preserves hearing better and is just as effective.  If you look at some of the other posts under this radiation thread, you can read Jim's experience as well as Craig's experience with FSR.

I'll be doing 5 weeks of FSR as well, probably starting in 2-3 weeks.  I've chosen to do this to have a better chance of preserving my hearing.  There are other advantages for using FSR and you can find more research on this topic on the web.  I can't think of the website with all the research, but you'll see it in other peoples' posts.

Good luck with your treatment.

Beverly

[ppearl214]

Hi Mary,

I'm a little confused but will try to also help (like Beverly).

GK is usually done in one single dose, as you note.  I do know "fractionated" GK has also been done and not sure if Dr. Noren in Providence is the one you are referencing. He is a highly skilled GK dr and well known in the field.  If fractionated, not usually 5 weeks.  I have heard up to 2-3 days, not beyond that.  I believe there is a group in TX that also has done fractionated GK.  My personal feeling is this.... if CK and Proton and FSR are already fractionated, then why endure the metal headframe (put on and off) for a number of days when other forms of fractionated treatment do not have to deal with the headframe and they are all shooting for the same affect... and the accuracy of each protocol would need to be examined.

FSR (as Beverly notes) in usually done in a approx. 25 day dose.  This is fractionated to help with hearing retention(as well as other forms of fractionated radiotreatments)  as well as taking it easy on the surrounding critical brain structures.  There has been some question about the Novalis FSR treatment based on accuracy but I know many on this site that have had Novalis FSR and can share their experience/outcomes with you. 

Cyberknife and Proton (both are done here in Boston) are also other forms of "fractionated" radio treatments.  Proton is done at Mass General Hospital... there is not a lot of public data for its efficacy on AN's, but I believe there are a few folks here that have had Proton done (BostonJake is the one that comes to mind).  there are also many here that have had Cyberknife, with many posts in this forum that share info.

I think I confused myself when I typed this but I didn't have enough coffee yet..... but, know we are here to help as best as we can.  Please hang in there.

Phyl

[MLB57]

Hi Mary--I have done lots of research over the past year as I had a 1 CM rt AN removed Jan 2001 and residual tumor was left so it's growing again and I will have FSR to better protect my weakened facial nerve--but what I want you to know is that the Univ of Pittsburgh was the FIRST in the US to have Gamma so I would if I were you have a consult with them before making your decision.  Regards, Mary from MA

[mary07]

Hi Mary,

I'm a little confused but will try to also help (like Beverly).

GK is usually done in one single dose, as you note.  I do know "fractionated" GK has also been done and not sure if Dr. Noren in Providence is the one you are referencing. He is a highly skilled GK dr and well known in the field.  If fractionated, not usually 5 weeks.  I have heard up to 2-3 days, not beyond that.  I believe there is a group in TX that also has done fractionated GK.  My personal feeling is this.... if CK and Proton and FSR are already fractionated, then why endure the metal headframe (put on and off) for a number of days when other forms of fractionated treatment do not have to deal with the headframe and they are all shooting for the same affect... and the accuracy of each protocol would need to be examined.

FSR (as Beverly notes) in usually done in a approx. 25 day dose.  This is fractionated to help with hearing retention(as well as other forms of fractionated radiotreatments)  as well as taking it easy on the surrounding critical brain structures.  There has been some question about the Novalis FSR treatment based on accuracy but I know many on this site that have had Novalis FSR and can share their experience/outcomes with you. 

Cyberknife and Proton (both are done here in Boston) are also other forms of "fractionated" radio treatments.  Proton is done at Mass General Hospital... there is not a lot of public data for its efficacy on AN's, but I believe there are a few folks here that have had Proton done (BostonJake is the one that comes to mind).  there are also many here that have had Cyberknife, with many posts in this forum that share info.

I think I confused myself when I typed this but I didn't have enough coffee yet..... but, know we are here to help as best as we can.  Please hang in there.

Phyl

     
I was wondering  did you loss your heaing  after having CK ? Did you have it once and done  ?
                    Mary

[ppearl214]

Hi Mary,

I will only answer for me and hope that other radio patients here (regardless of which radio-protocol they had done) will advise their hearing status pre and post treatment.

At the time of my treatment,  my hearing was at the bottom of the 'normal' range, with voice recognition about 96-98%.  I had my CK treatment a year ago. I had a 5 dose/day treatment (5 days in a row) for a total of 30Gy.

At my last appt (10 mos post CK) with hearing exam, my hearing is the exact same that it was at the time of treatment.  They also found my AN to be shrinking and beginning signs of necrosis (tumor death).

I hope that helps. We're all here for you!
Phyl

[mary07]

Hi Mary,

I will only answer for me and hope that other radio patients here (regardless of which radio-protocol they had done) will advise their hearing status pre and post treatment.

At the time of my treatment,  my hearing was at the bottom of the 'normal' range, with voice recognition about 96-98%.  I had my CK treatment a year ago. I had a 5 dose/day treatment (5 days in a row) for a total of 30Gy.

At my last appt (10 mos post CK) with hearing exam, my hearing is the exact same that it was at the time of treatment.  They also found my AN to be shrinking and beginning signs of necrosis (tumor death).

I hope that helps. We're all here for you!
Phyl

CK /GK are they pretty much  the same on how they work ?Going to Philly renting a place  for 5 wks  is
pricey that option is good becouse they say it helps preserve the hearing but to rent another place well need I say who can afford it. It would be better for me to  just do GK once and done but then I'm affraid I will loss the hearing  for sure . Its a hard decision . I am about 2 hrs away from Jefferson I cant go back and forth everyday . By the way do you have fatigue ?
Ok well Thank You for the help .   Have a good day .
                                                             Mary

[Sam]

Mary,
What is the size of your tumor? I have been pro-Gamma knife from the begining, not saying that FSR, and Cyber knife are a lessor to GK but, I have said many times before "do as much research as possible on your treatment options". Most will feel different about the accuracy, I personally feel that GK is it, but that is just me. I went for my last follow up and found that what I was told about losing my hearing before treatment some what differed from my 3 month follow-up. I was told I would have total hearing loss,but, My Doctor told me in my 3 month follow up that I may experience some gradual hearing loss, or none at all. so far I have retained my hearing. the only thing that bugs me is the constant ringing in my ear, and the occasional dizziness, and fatugue, which I was told would subside in time. Hope this helps!
Sam

[macintosh]

Mary--

I think the best evidence at the moment suggests that FSR has a slightly better rate of hearing preservation than other forms of radiosurgery. Size and location of the AN also matter. So if, based on size and location, you would have a 60% chance of preserving useful hearing with GK, you might have a 70% chance with FSR.

Others might chime in with studies with more precise figures. I think it is generally agreed that this topic presents serious difficulties for researchers. To get accurate numbers you have to track a lot of people over a long period of time, and if some patients' hearing gradually diminishes over time, but never disappears entirely, it can be difficult to make precise comparisons.

I had one shot LINAC radiosurgery in January on a small AN. No side effects so far, hearing stable, minor tinnitus the same as it was before treatment.

Good luck with your process,

Mac

[ppearl214]

Hi Mary,

To answer your question about fatigue..... it has been written up about how all forms of brain tumors (benign and malignant) and fatigue go hand in hand. If you do a "search" here for "brain tumor and fatigue", you will find a link for a brochure put together by Dr. Peter Black/Brigham and Woman's Hospital, and Nancy Conn-Levine that discusses this very issue.... how they go hand in hand to ways to help conquer it.  I have my bouts of fatigue... and due to other issues I have, fatigue is a common demoninator in all that I endure... but, eating right, listening to my body when it wants rest and exercise are key in helping to combat it.   

Mac, can you please state where your got your stats/%'s regarding hearing preservation with GK and FSR? Just curious.

Mary, many are right that you must research, research, research, which is exactly what you are doing.  GammaKnife and Cyberknife are extremely viable AN treatment options.  Although each one has a slightly different mode of working, each are proven treatment options for AN's.  Fractionated radio-treatments, such as Cyberknife and FSR, are usually touted as helping to preserve hearing.  There is so much info available and it can seem overwhelming at times.  My hope is that you decide, based on what is truly in your heart, on the best treatment option for you.   Regardless of what you decide, know that you should never question your final decision and know that in your soul of souls, you are doing the right thing for you.

Hang in there!
Phyl

[macintosh]

Hi Phil—

I was hoping someone else had some good stats on hand for this. I based what I said on a variety of sources—pubmed articles, treatment center websites, and conversations with doctors (including my own). Here’s the longer version: some treatment centers claim various rates of hearing preservation for different techniques. The questions that have been raised about these claims often appear as passing comments in articles that give general overviews of different treatments, and it would take a lot of digging for me to get all of this out again. But the skeptics have suggested that sometimes the studies haven’t been long enough, and that the level that defines “useful hearing� is set too low.
   Basically, the problem is that there is a discrepancy between what an individual patient wants to know—Will I keep my hearing?—and what a researcher can demonstrate, which involves a number of variables that are difficult to track. First, you have to have long term studies, and you would have to take into account what level of hearing people had when they were first treated. You can’t just survey a lot of people who had treatment five years ago at a variety of centers, because you can’t assume that there won’t be initial differences between people who had one form of treatment as opposed to another. Then you have to define what constitutes “hearing preservationâ€?—does it mean that it stays the same as at treatment, or how much can it change before that counts as a loss of hearing? Then you have to keep track of all of this for a significant number of people being treated in different ways at different locations, and you have to account for differences within treatment modalities at different centers (for example, if there are different numbers for CK at center x vs. center y, what does that mean about the rate of hearing preservation under CK? Does it mean that CK should be measured by the best rate available, or by the average?)
   It may turn out, ten or twenty years from now, that something more definitive can be said. I think it's fair to say that there are indications that FSR is producing promising results on hearing preservation, but from the standard of “scientific proof,â€? there need to be more studies.
   I hope that’s helpful.

   Mac

[macintosh]

Phyl et al.--

Let me follow up that long winded answer with a shorter one I just remembered. In the Nov. 2006 Journal of Neurosurgery, near the end of an article by William Friedman he does a survey of studies on FSR. It's pretty dense, and he gives the citations in his footnotes. That's some of the primary material behind the loooong answer I just gave.

Mac

[Mark]

I  think the difference is really limited to the treatment protocol provided, not the center. If X CK or GK or whoever sites all provide the same number of days and GYs dosage, then I doubt the different sites involved really matter since the machine is the same.

Mark

[kat]

Hi Mary

I can only speak from my own experience about GK the one zap procedure . There has been no deterioration in my hearing since I had my GK over 2 years ago . All in all I have had virtually no unpleasant side effects also my last MRI showed that the AN was shrinking and for those reasons I am very happy with my choice of treatment .  Good luck with whatever treatment you choose .

Best regards Kat

[linnilue]

I lost almost all of my hearing along with the acoustic reflex(balances sound) 4 months post linac.  I was given steroids but they didn't improve my hearing.  It(the hearing) literally disappeared in the middle of the night and I woke up and didn't know what had happened to me.  It was very wierd.  I still have constant tinnitus but honestly the lack of hearing doesn't bother me, I am very used to it and I explain to people that I can't hear in my left ear and they are very accomodating.  Honestly, I don't even think about the hearing loss anymore, it is what it is.  I'm just happy to be alive.  Besides I can hear perfectly well out of my right ear.  The one bizaare thing is and I know others will attest to this, is that you cannot recognize where sound is coming from, i.e. if my kids are calling to me I cannot tell where they are in the house.  I do notice that I am able to sense someone approaching before I hear them.  I also wear a musician's earpiece to block out loud noise which due to the loss of the acoustic reflex is difficult to deal with.