Hi, everyone:
I just had my 1-year (11+ months) followup MRI and audiogram (post-CK) and have terrific news to report: my AN has shrunk -59% in volume in the last 6 months!!!!
That is, it is now less than half the size it was just 6 months ago.
My wife and I were floored (in a positive way) by the news, especially because my tumor had swelled +36% in volume in the 5 months following CK. It is now 13.6% smaller than when it was first diagnosed a year and a half ago.
Dr. Chang told us it was highly unusual for an AN to shrink that quickly and that it usually takes 5 years (post-CK) to see that degree of shrinkage, so I am profoundly grateful for being so lucky. There are far less signs of necrosis in my present MRI than in the one that was taken at 5 months post-CK (6 months ago); Dr. Chang believes that process is now coming to an end and necrotic tissue is scarring over (scar tissue shows up white in an MRI, just like living tumor tissue does).
Unfortunately, I lost another 15 dB of hearing in my midrange frequencies over the past 6 months. At 2 kHz, that equates to a 30dB loss since getting CK.
But I
gained back 10 to 15 dB that had previously been lost in the bass frequencies. Dr. Chang thinks I won't lose any more hearing, but I also won't get any more back. Because the tumor necrosis (and attendant inflammation that irritates the hearing nerve) is near the end of its process, he thinks my hearing won't degrade any further. I am now a candidate for a hearing aid, but Dr. Chang wants to wait another year until my audiograms (hopefully) stabilize before I'm fitted for one. He doesn't want me to be chasing a changing hearing response with a new hearing aid every six months.
The second lesion that had been discovered six months ago (it had been overlooked in previously taken MRIs) is now confirmed to be a hypoglossal schwannoma (brain tumor).
However, Dr. Chang compared three previous MRIs (taken over the last 19 months) to the current MRI and noted it has not changed in size, so he recommends I watch-and-wait on that one. It is very small (7 x 7 x 6 mm), I have no symptoms related to that tumor, and the hypoglossal nerve is very resilient (not easily damaged).
So, on balance, this is terrific news. It's very possible my hearing would've suffered even without getting the CK, as it was consistently going downhill on my AN side before I got treated.
I have no idea of knowing whether or not the diet and supplements I'm on have helped my AN shrink so fast, but I suspect the proteolytic enzymes I've been taking (Flavenzym and bromelain) may have accelerated both the tumor necrosis and shrinkage. For those interested in this, here is a link for more info on the Sloan-Kettering website:
http://www.mskcc.org/mskcc/html/69342.cfmThese enzymes had no discernible effect on my tumor's growth before I had CK. After I got CK, I doubled my dose of enzymes. Other supplements I started taking after CK include vitamin E (1200 IUs per day, split into 3 equal doses of 400 IU, taken on an empty stomach). My reasoning was that vitamin E is both a nervous-system nutrient and prevents scar tissue from forming. I theorized that if I could keep the AN from scarring over after CK, it would shrink more readily.
Who knows, this could all be coincidence and my tumor might have shrunk as dramatically as it has without me doing anything special. There's no way of knowing, and these tumors are not very well understood. But because I've had such unusually positive results the past 6 months, I'm going to stick with my program for another 6 months. Dr. Chang believes my tumor won't shrink significantly any further. But I'm swinging for the fences!
Best wishes to all,
Tumbleweed
