Cyberknife option

[SuzeAN]

Hi I am a newly diagnosed AN (left side) patient, and I am feeling better after reading all these posts.  I was feeling very alone in this situation until I found this site.  I am female, 40, married and have 2 little girls.  We haven't told the kids about my condition, just that I have an "ear problem". My MRI results show that the  "little addition" to my brain is 15mm x 25mm x17mm.  Just visited the Head & Neck surgeon yesterday, had a 2nd hearing test...same as Nov 2004...slight hearing loss, oh and I have tinnitus. I was wondering if anyone has had the Cyberknife procedure, I have read about it and have seen only one person (Mark) have a post about this.  I have an appointment next week with the AN "specialist" in my city, he was on staff with House and is affiliated with them.  I have yet to hear his recommendation of radiosurgery or microsurgery. 
Thanks for any info,
Sue

[Mark]

SuzeAN,

I am a member of the Cyberknife Support Group based out of Stanford and would be happy to answer any questions you have on that treatment. The CPSG web site has a number of patient stories for those treated for AN's as well as other conditions. There is also a doctor board where you can pose questions by e-mail.

Mark

[alibauer]

Hi SuzeAN,

I am in pretty much the same boat as you, but thankfully aside from some dizziness I'm fairly asymptomatic. This site is a Godsend. Good luck. My thoughts are with you and your family.

Mark, please write more about gamma knife option! I find all the different approaches to treating this rather confusing. Unfortunately, I've only been to an ENT so far and he is really abrupt, rushes me out of his office, and only talks when I ask questions. I feel like I know nothing so far. Help! 

Thanks!

Ali

[Mark]

Hi Ali,

In terms of treatment options I think you are asking about radiosurgery in general. The Gamma Knife ( GK) is the original machine designed in the late sixties and still used in many medical centers today to treat Acoustic neuromas and other skull based lesions. Unfortunately, over the years GK has become interchageable with radiosurgery much as kleenex is with facial tissue.

Radiosurgery is essentially the practice of treating the tumor with low dose beams of radiation. The beams overlap at the tumor and deliver a lethal dose to the tumor while avoiding the surrounding healthy structures. Radiosurgery for AN's has two primary protocols, one shot or FSR ( fractionated doses) . One shot provides the entire dosage to the tumor in one treatment while FSR provides lower doses over 3-5 days depending on the medical center. FSR is the newer process and was developed under the theory that the facial and hearing nerves which are involved in the AN would recover between treatments while the abnormal DNA of the AN would not, thus giving better preservation to the cranial nerve function without sacrificing the ability to kill the AN. Most studies to date seem to support the success of this approach but it has been around not much more than 10 years so long term studies are still not avaiable.

After you select the type of protocol, the choice of the machine and experience of the medical staff need to made. Besides GK , there are other more modern technologies such as Novalis and Cyberknife ( CK). ( CK is what I was treated with). The GK is generally limited to one shot treatment because of the need for a head frame which makes FSR hard to do. It also uses cobalt radiation which is considered not as desirable as linear acclerator ( LINAC). Novalis and CK can do FSR because they use a head restraint or mask. Historically the GK has been considered more accurate at around 2mm precision and the FSR capable machine slightly less so. However, recent published studies have the CK at 1 mm accuracy so it exceeds GK while still allowing FSR. A far better comparison of the machines can be found at the CK society web site ( cksociety.org )

As far as your ENT goes. Virtually all of us get first diagnosed by one, but in terms of treatment guidance they are generally not much help. They read about an AN once in a class somewhere but few stay up on treatment options. You need to interview the most experienced neurosurgeons and radiosurgeons to get a perspective on each treatment option. Ideally, it's good to find one who does both so you feel the bias is removed as I was fortunate to do.

Hope that helps

Mark

[GM]

Hi Sue,

I too am a Gamma Knife patient.  As you have probably read every treatment option is different and has it's upsides/downsides.  My treatment took place in November of 2003.  There is a chance in 35% of patients that the tumor will swell after treatment.  This is not to alarm you...it is to educate you.  Mine went from 1.8 cm to 2.0 cm over a year and a half, and is currently hanging out there, I am also on a steroid treatment due to a recent ear "clogging" I'll let you all know how that turns out.

It may also be helpful to do the conversion on your tumor from MM to CM.  My calculations put yours as an overall 1.9cm.  (15mm = 1.5cm, 25mm = 2.5cm, and 17mm = 1.7cm...addd them uo and divide by three equals 1.9cm).  Most people talk about their tumors in cm measurements.  Yours should be well within the Gamma Knife/Cyber Knife treatment size option if that's what you decide on.  I used this site for the online conversion calculator:
http://www.ilpi.com/msds/ref/distanceunits.html

I too struggled with the decision on which option to take, you're not alone on this.  Don't be afraid to ask your doctor questions.  You are VERY fortunate to not have any other effects other than hearing loss, I too found mine by failing a hearing exam.  I found that after the doctor knows that you are educated, they talk to you more like an informed patient and less like a "lests not panic the patient" type of discussion.  Remember if you had to have a tumor, this is the one to have!  Slow growing, and not cancerous.

Gary

[SuzeAN]

Hi all,
Thank you for all your information, I have an appointment on Tuesday with the "local" specialist, I know he is an
ENT but I don't believe he is a neurosurgeon....and that is whom I need to be talking to.  We have GK available here in Las Vegas, however I don't know just how new the facility is and I don't want to "patient #10" as they are learning how to use this machine or a CK machine.  I am leaning toward CK and trying to get much information as possible.  The Cyberknifesupport.org is very helpful. 

Thanks much for the the measurement information, because I was very confused about that.

The swelling part is temporary right, I was wondering too if there were other alternative methods to deal with swelling as the tumor
is dying off?  Looking forward to when my tumor "ceases to be."

Sue

[SuzeAN]

    Hi Mark,
    THANK YOU  for all the info and your response to my email!  I really appreciate you taking the time here!
     
     Cheers,
     Sue