Hi AD and welcome. Good to see you here. I have to mirror much of what Lorenzo has written as I'm just now 1 yr post CK and have seen (short term) much of what he has written. He writes rather well for being across the pond
*blows kiss to Lorenzo*
To answer your questions, as it pertains to me:
1. The CK Center here (Austin, Tx) has only been using the CK for two years and I wonder if that is long enough to be considered experienced and to really have a track record, since the results of CK are not quickly known. Would it be wise to contact Stanford? I work for a large national company that uses BC/BS out of Minnesota but applies to the entire country.
*I had my treatment at Beth Israel, approx 1-2 yrs after they got the CK. I had no qualm in their qualifications to do the CK treatment as I researched their training and follow ups with other leading CK treatment centers as well as Accuray (the manufacturer of the CK system). Knowing they were qualified to do the treatment, I chose them without batting an eyelash.
2. What are the most reliable statistics regarding the outcomes for AN for invasive surgery vs. CK or GK? What I am most concerned about is the risk of facial paralysis and all that goes with that. I travel all over the country, working with and presenting to clients in K-12 education.
*Low risk facial paralysis and such with CK. Since the beam conforms to the unusual shape of each individual AN, the chances are lower that surrounding critical structures are affected by the beam (ie: brainstem, facial nerve, etc).
3. RE hearing -- I am a little less concerned about the hearing, as it appears that neither option will make that better and both will probably make it worse. It also seems that worsened tinnitus is a probability with both. How true are these perceptions that I've gleaned from the content on the web, publications of the AN society, and from the neurosurgeon? He said that, as far as he was concerned, the CK always resulted in hearing loss, that "raging tinnitus" could not be considered to have "saved hearing."
*CK does not always result in hearing loss. As a matter of fact, CK and FSR show a lower rate of hearing loss due to the fractionated treatment, thus, better chance of hearing preservation (again, min. hit to critical structures). As with any form of treatment, risks are there and nothing is guaranteed in life, but hearing preservation is over 90% chance. In my case, I am 1 yr post CK and at last hearing test (10 mos post treatment), I have 100% of my hearing for what it was at time of treatment, so I am a good stat of CK hearing preservation.
4. If I do go with CK, what are the side effects that I can expect? For the first year, should I expect the symptoms I have now to remain the same, get better, or get worse? These symptoms are hearing loss as described above and slight tinnitus. I am also experiencing some earache and some headaches; on the other hand, I have had sinus headaches most of my life, so I don't tbink I can blame all of that on the AN. Also, I have been prone to motion sickness since I was about 12 (I'm a Baby Boomer --- yes, one of those!), so no one seems to thinks that the proneness to motion sickness has to do with the AN.
*Lorenzo outlined wonderfully potential side affects. I did run into fatigue (still some on occassion) as well as enhanced tinnitus (very tolerable in my case) for the first 2 mos post treatment. All side affects, for me, have now subsided and I only have extremely rare intermittent tinnitus.
5. I understand that either option has risks of not working or of unfortunate side effects. What is the probabilityof each with CK or with surgery? I guess that's the same question as before. However, if I go with CK and the tumor grows at an unacceptable rate, what are the options then, if any? How long before doctors can provide a conclusion as to whether or not the CK has worked?
*In the case of CK, it's the first 3 yrs that truly show that the CK treatment has worked. Beginning stages of end result can start to show in the first 6-12 mos (in my case, we saw beginning stages at 8 mos) and it will take the first 3 yrs for determination that the CK treatment has been affective.
6. I understand also that it is common for the tumor to swell at first and that, after 6 months, it may appear to have "grown," but that no growth or a reduction in size should be apparent at one year after treatment. Is this correct?
*Correct. Some report some minor size decrease (which has been seen with mine) but the ultimate goal of any form of radio-surgery is to kill the core DNA of the growth, not necessarily size reduction.
I hope this helps and wish you well in this decision making process. I hope others chime in as well to answer from the surgical perspective.
Good to see you here.
Phyl
