Annie, you rawk!
Thank you... and keeping fingers crossed that at your next appt, things are on track and all is heading to tumah' death!
Ok, my turn....
I had my CK treatment approx 1-1/2 yrs ago. As my research informed me that typical CK treatment is usually 18-21Gy of radiation over 3 days, my drs noted they wanted to do 30Gy over 5 days. Of course I was leary on that as I had not heard of anyone that had a 5-day, 30Gy treatment.... but when they shared with me about hearing preservation, etc for that type of treatment plus my comfort level with this team, I agreed to the the course of recommended treatment.
So, just as Annie noted..... I had my mask made (currently collecting dust in the attic, although thinking of hanging it on the wall as a plant holder!) and off to begin my treatment. I brought music with me each day... took an Ativan before each treatment (ah, the "happy" pill) and actually slept my way through treatment. Like Annie.... it was a breeze. I was told to look for the "eye" during treatment when the CK machine moved over me....boy, that was too funny. Hard to not laugh in that mask, but definately giggled when I saw "it". I think the dentist drill is worse than CK treatment! After each treatment, my best friend and I went to lunch, went shopping, etc. The fatigue did set in on occassion and nothing a short nap couldn't cure. I was on Decadron (sterioids) for a couple of weeks to help with brain swelling/edema and that was taped off.
Went for my post treatment MRI and confirmed that there was no enhanced growth (mine was growing at steady/good speed), so no new growth worked for me. Went for my MRI again 8 months later and OMG, we saw a "rim enhanced lesion" with darkness beginning in the center of the AN.... ah, beginning stages of necrosis!
My next one is also coming up and hoping that the bugger is showing more death... keeping all appendages crossed for this news.
My hearing preservation is on the money. It's interesting that folks note to me about FSR treatment, so I am assuming they speak of the Novalis system, with a course of treatment over an approx 25-30 day treatment. Now, CK is also FSR as FSR stands for "fractionated stereotactic radiation".... fractionated over a number of days. So, with my "FSR" of CK treatment, I have to agree with the dr's even more now that the 30Gy/5-day dose has worked wonders for my hearing preservation. I have had 3 hearing tests done since my treatment and my hearing remains at 100% of what it was at the time of treatment (my left ear was just below the "normal" range for hearing). So, from a hearing preservation standpoint, I can still hear in my AN ear.
I know individual results may vary in all forms of AN treatment. I have heard that some have had hearing diminish less than a year post treatment... I know of many that had CK that maintain their level of living as it was pre-treatment.... I have had some sharp head pain issues, some vertigo, balance issues... as I have a dual "head" diagnosis (AN and Chiari 1 Malformation), for me, it's difficult to tell which ailment is causing these issues as both have a tendency to have the same symptoms.
So, here I sit, just shy of the 1-1/2 yr mark for post treatment... and honestly, in regards to my AN and CK treatment... I'm doing great. I know I have been lucky in my decision and post-treatment progress. I know many that are also doing terrific and some having some issues... but I have to note that CK, for me, was a fantastic option and my hope is that what we share here will help others in their decision making process.
Yes, I'm a hint biased towards CK as I've done very well with this option..... but I also know that should things change down the road, I have my back up plan that I am comfortable..... I know CK can be done again if need be (Gawd forbid!).. and if we need to go microsurgical, I know that the surgical options being done are great as well.
For those that want to actually see my treatment in progress, you can click on my Frappr link below in my sig line and scroll down to the pictures on the bottom left. It shows the mask, it shows the table/CK machine and me flippin the bird to my AN!
Hope this helps.