In February 2015 I started having hemifacial spasms on the left side of my face (AN side). They would come on in times of stress or big smiling that seemed to aggravate the facial muscles. The spasms lasted for up to 30 seconds at a time, during which my mouth would pull up toward my eye, and I would feel it down into my neck. Needless to say, this was uncomfortable both physically and psychologically.
I went to visit my doctor at Johns Hopkins, who suggested that it could be a latent herpes virus affecting those nerves/muscles, and his treatment suggestions included Botox injections to freeze my face in place, which I did not do. I did take a course of antibiotics in case it had to do with the herpes virus. The spasms subsided for the most part in late 2015 without any additional treatments.
My husband and I moved from DC to Denver in mid-2016, at which point the spasms came back in a very urgent manner; they were very frequent and seemed to be triggered by anything involving my face, even just talking in a calm manner. Moving across the country is a stressful event, so that was underlying the entire episode.
Within a couple of weeks, I had an appointment with a neurotologist at the University of Colorado Anschutz Medical Campus and my AN journey basically started over again. He was pretty convinced from the start that I was experiencing a regrowth of my tumor, which was irritating my facial nerve in the IAC and causing the facial spasms. We requested a copy of all of my MRI scans from diagnosis to current-day, and he pointed out the difference between scar tissue illuminating on the MRI vs how it looked at that point, which was much more tumor-like. He presented my case to the entire skull-based tumor department at UCHealth, and the consensus was that my tumor had regrown.
He did not recommend surgery to me for a second time because it's really hard for any surgeon to operate in the same small area of the brain twice. The structures in the skull that typically serve as landmarks in the first surgery can get damaged during surgery and will not be available to assist the surgeon in the second surgery. Also having the surgery performed by two different surgeons would not be ideal since everybody does things a little bit differently. I then met with a neurosurgeon who does radiation, and he explained why that would be a good treatment option for regrowth.
As I learned the first time around, I wasn't going to move ahead with any treatment without getting additional opinions. I had read great reviews of Dr. Chang at Stanford on the ANA discussion forum, and my brother lived near Palo Alto at the time, so I headed further west for my second consultation in August 2017.
My meeting with Dr. Chang was extremely reassuring. He does both microsurgery and radiation treatment, so he knows the risk vs reward of both options, and because he is sought out by patients from all over the country, he is more familiar with regrowth situations than other doctors may be -- so basically he knows more about the rarest of this rare condition. He, too, explained that microsurgery a second time would not be not advisable and recommended that I have CyberKnife radiation (which was invented at Stanford). There were basically no downsides to CK other than that the tumor remains in your head and you have to have patience as the radiation does its thing over the next 3-5 years.
I'm not generally a patient person, but the risks of microsurgery seemed too great, and there would be no guarantees that all the tumor would be removed a second time either. I decided that I would rather deal with some uncertainty about the radiation vs recovering from another brain surgery too. I could come back to California later in the year and have the radiation treatment completed in a week--sounded like a vacation to me!
I went ahead and scheduled the CK for the week after Thanksgiving 2017. My husband and I would come out and have Thanksgiving with my brother and sister-in-law, stay with them, and we'd all hang out in between my appointments...
And that's exactly how it went! It was actually even easier than we'd thought. The week went something like this:
- Monday we met with Dr. Chang and he explained everything that was going to happen during the week.
- Tuesday I met with the radiation oncologist for neurosurgery who would be planning the radiation with Dr. Chang. I also had some pre-op testing done (kidney functions) and then a super-detailed CT scan they would use to plot the points for the radiation. And I had the mask made that holds your head/face tight against the table so you don't move while the robot arm is delivering the radiation.
- Friday I had the CK done for a total of 22 minutes (I forget the amount of radiation that was delivered but the overall dose was relatively small because the tumor was pretty small).
- Sunday we flew home to Denver.
I just realized I didn't explain CyberKnife and its benefits. The robot arm delivers the programmed dose of radiation to the plotted points in a similar way to the Gamma Knife machine, which is the older technology. With Gamma Knife, they have to screw a frame onto your head to hold you exactly still during the time the radiation is being delivered. As I mentioned, I had a plastic mask made that conformed to the shape of my head to hold me in place--nothing had to be physically attached to my skull to hold me in place because CyberKnife is also doing checks for movement the entire time it's operating. It can automatically adjust the placement of the radiation if it detects subtle movement. They told me that if you sneeze while receiving CK, the machine will automatically stop. That is the main difference between CK and GK that I know of; they both use fractionated radiation to pinpoint a single location for the radiation from different angles to reduce the amount of radiation going to parts of your body that you don't want it.
The other cool thing about my CK experience was meeting the radiation oncologist. I had read that patients usually get a dose of steroids after radiation, and I was hoping to avoid taking those due to the issues with blood sugar levels (blood sugar goes very high, insulin doesn't seem to work very well). I asked him if I needed to take them, and he said no, that he also has type 1 diabetes and totally understood my concern, and he said that people don't usually need them after radiation, it's more so that they feel like they "got something." That was quite a relief and also pretty amusing.
I had my first follow-up MRI in June 2018, and it didn't show anything unusual. The tumor looked approximately the same size, and any time there's no growth, that's a win. I wasn't having any headaches or facial spasms, or any other post-radiation symptoms, so that was all good too.
The next MRI was at the one-year mark in December 2018 with a similar report--not much change in size or appearance, and I was still symptom-free.
The last MRI as of the date I'm writing this was at the two-year mark in December 2019. They said it was maybe a tad smaller with some darkening of the overall appearance, which would indicate that it is dying. Basically it looked like what they would expect at this time interval, so they said the next MRI will be two years out, in December 2021.
I am totally fine with that since they've seen more of these than I have, and I trust their expertise. I haven't had any facial spasms since 2016/2017, though I can tell that the left side of my face seems "tired" during stressful times or when I'm really tired. The signs are that my smile isn't quite as symmetrical, and my left cheek/eye don't move up during the smile as they would when not "tired." Other than that, I'm (obviously) still deaf on the left side, and my balance is still nearly normal.
I feel very fortunate to have moved to Colorado when I did so that I was forced to address the issue with another set of doctors. I think that would have happened eventually if we stayed in DC, but it was good to address it sooner than later. I also feel very fortunate that I was able to travel to Stanford for the CyberKnife treatment and meet with experts for this "rarest of rare" situation. I am hopeful that my next MRI will continue to show that the tumor is shrinking and/or dying, and that "Manny's cousin" will not make a reappearance in the future.
Thank you for continuing on this journey with me!
