Well where do i begin? I appologize ahead of time for the length of this post. I have watched this board for several years while on my own watch and wait schedule, but never posted, being content to read of others experiences from time to time. So yeah, i am a newbie.
During this time my tumor has grown very slowly from 4 mm to 10 mm, several mm in the last year. So now comes the decision i have been dreading.
Most of the time i was researching surgery but when i finally started talking to doctors about it when it became obvious i would have to do something, they prefered the retrosigmoid approach. After reading about all the drilling and possible side effects i was not content to accept this.
I have had until recently nearly perfect hearing so really i wanted the hearing preservation surgery. But one visit to a neurosurgion told me that the tumor is on a lower nerve. The doctors here are not comfortable doing the middle fossa surgery and working past the facial nerve.
Plus i am on Kaiser and i must do what Kaiser says. So instead of getting a middle fossa operation at the House Ear Clinic as i wanted i must deal with the local surgeons abilities whose sucess rates are not nearly as good in my opinion.
Despite my fear of having my brain exposed to radiation, after careful consideration of side effects from both surgery and radiation, rates of sucess as well as my own ability to take time off work and our finances, i chose to go with radiation instead. Now i have come down to the wire i must choose again; Trilogy at Innova in Fairfax Virginia or Gamma knife in Washington Hospital Center.
I did call two different doctors to ask about the machines and the teams.
I asked:
1) About machine accuracy and got generally the same anwer, under a millimeter.
2) How many patients are treated/year?
Innova = 20/yr & WHC = 20-25/yr Both seem to be a small amount to me.
3) Rate of nerve preservation after 2 years?
Innova = 85% & WHC = 75-80% with a fall off rate the older you are.
4) How long has the team been working together?
Inova = 9 yrs & WHC = 5 1/2 yrs
5) Who is on the team? I got a few names which i will not put here because i have not looked them up yet.
6) I forgot to ask the Inova doctor about tumor death rate, but the WHC doctor said about 15-20%. I am wondering if there is a difference here.
7) I did not ask the Inova doctor about hot spots since they are not an issue with Trilogy, but did mention them to the WHC doctor and he did not seem to be very concerned about them. I recieved no specific facts.
I am leaning toward the Trilogy simply because the doctor was a lot nicer and much more willing to talk, Trilogy has the shaped beam that is supposed to be more precise than the gamma knife, it also does not have the problem of hot spots, there is a face mask instead of the screw on headframe and although i know its kinda silly i do not like the source of the energy for the gamma knife coming from cobalt.
So is there anything anyone would want to let me know about your experiences of either gamma knife or Trilogy? Is there something here i am missing about either procedure?
Any information is appreciated.
