Cyberknife recommendations

[CC]

Thanks to the postings on this site I went preapred to my first doctors' team appointment and both my spouse and I managed to survive the awful scare tactics as they tried to push me into surgery.  My AN is only 1.7cm, not pressing on the brain and I have only minimal hearing loss.  I'm really reticent to have my head opened, prticularly by the retrosigmoid surgery they said was the only way.  I think that cyberknife may be the way to go for my AN.  I've done a bit of research but there doesn't seem to be a "House Clinic" standard equivalent for cyberknife.

Does anyone have an recoomendations? Is Stanford the best because they invented it?  Any thoughts would be gratefully appreciated. 

Also thanks to all the people who prepared me for what the surgeons who probably say.  And thanks to everyone who put together the questions to ask doctors.  It's a scary enough process without doctors trying to scare you further.  Thanks again - I look forward to reading your replies to this posting.
CC

[Mark]

CC,

Stanford would probably be considered the "house clinic" of Cyberknife facilities if the criteria is simply who is the most experienced. In actuality, I would guess that any of the CK facilities would provide excellent treatment. Radiosurgery is provided by a team made up of neurosurgeons, radiation oncologists and physcists who use high powered computers to program treatment plans. There is a lot of cross checking among all three segments to agree on the final plan. Based on that, any CK facility should be able to deliver a very consistent result.

Mark

[jrhafer]

CC

I had the same concerns as to if I should go to Stanford for my Cyberknife treatment.  I live in the Saint Paul Minnesota area and then discovered that Saint Joseph Hospital right here in Saint Paul had a Cyberknife Center and that they treat ANs' there.  I liked the feeling of being at home for treatment so I opted to have my treatment here.

So far, (6 weeks post treatment), I have two comments.  First, physically, I am doing great with no fatigue, hearing loss, facial nerve changes or anything else.  Physically, I feel as if I had nothing done.  But I did get one side effect, tinnitus in my treated ear.  It is a very high pitch ringing and is very bothersome.  I only hope it will decrease in time and stabilize.  Right now it flares up and down and changes even within minutes from very bothersome to tolerable.

John

[JHager]

Hi CC,

It will probably help other members to add to the comments if you mention which area of the country you live in.

Anyway, I'm having my AN removed via translab because it's big, and against the brainstem.  That being said, my neurosurgeon trained at the Barrow Neurological Institute at St. Joseph's Hospital in Phoenix, and he spoke very highly of their Cyberknife team.  My son was at Barrow for eight days in Fall 2003 for a seizure disorder, and I came away incredibly impressed by the hospital, the doctors, and the staff.  Plus, that area of Phoenix offers a number of things for people to do should you have family with you.  (I would guess that you will want some 'alone time' for resting, and they will need to get out of the hospital on occasion.)  And, there's a great Hilton two blocks away that offers a special hospital rate for St. Joe's patients. 

So, if the Southwest is accessible or appealing to you, I might check out Barrow.  Google "Barrow Neurological Institute" and you'll find them.

Good luck!

Josh

[Larry]

I'm in Sydney Australia and have had an AN removed 3 years ago. It has now reappeared and I am exploring options. There is a  treatment here called sterotactic radiation which is similar to Gamma Knife in the U.S.

My only advice to people is to treat these things sooner than later. As the AN grows and hearing loss occurs, that hearing loss is lost forever. Also, the more the hearing loss, the worse the tinitus. i find it really annoying.

My options are surgery which would sacrifice my hearing completely in the affected ear or radiation. There are different types of radiation treatment and reading this site, the after affects differ for everyone. The issue that i have with radiation is that it does weaken the facial nerve and this can cause "droopy mouth" etc. I guess this technology is changing and getting better by the day.

At this stage, I am not keen to lose all the hearing in my affected ear (even though i only have a little anyway) and favour some form of radiation treatment.

Larry