FROM CHILDHOOD, I have always actively engaged in life. At age 54, I was in good physical shape and my annual medical exams indicated that I was in excellent health. However, “Things Fall Apart,” as they say. Last March, in a single moment of time, the life that had been so normal up to that point came to end, and I took my first stumbling steps down a new and difficult pathway.
The change occurred when I was with my family and several friends celebrating our daughter Stephanie’s 21st birthday at a condo on the beautiful island of Kauai. One morning I was gathering up some filthy shoes we had dropped by the door the previous evening after an exhausting day of ATVing through storm, rain, and mud. As I bent down, I suddenly became lightheaded. I attempted to negotiate the stairs up to our living quarters in a clumsy fashion. Then I suddenly realized that my right arm was swinging uselessly and resisting any attempt to control it.
When I finally arrived at the top landing, I collapsed. For a few moments I lay on the floor struggling to get to my feet. I finally staggered to the door but was unable to do anything except slump against the doorframe and knock faintly, hoping to attract some attention. When Steven finally opened the door, I staggered towards him with no control over my body. He guided me to the bed, but I still couldn’t move, speak or even focus my eyes on my surroundings.
The EMT’s were unable to find anything wrong with me, so they concluded that my problems had been caused by low-blood pressure and departed. Steven and I were certain that whatever had caused my collapse was more serious than mere hypotension, so he took me to the ER at the local Wilcox Hospital, where they conducted tests including a CT scan, an MRI, and an EKG. The results came back normal, so they imagined that the original low blood pressure diagnosis had been correct. They cleared me to fly back to California and advised me to confer with my own doctor.
Three days after arriving at our Discovery Bay home, I had an appointment with my primary care doctor, Dr. Joline Heo. Even though I was feeling normal by that time, Dr. Heo was alarmed at the symptoms I reported and referred me both to a cardiologist and a neurologist.
Neither of them did anything except check my vital signs, read the report from my last physical, and conclude that it had only been a case of low blood pressure along with dehydration, stress, and possibly a minor infection. Steven and I continued to believe that the medical community was still missing the reality that seemed so obvious to us — that something serious was happening to my mind.
The episodes didn’t stop. We eventually learned that doctors refer to my symptoms as Transient Ischemic Attack, or TIA, which they assigned to the category of mini-stroke. Whenever a TIA would occur, we would attempt to identify a possible cause. For example, when TIA’s occurred on two occasions while I was exercising, we thought over-exertion might be the cause. We discarded that possibility when a TIA then occurred while we were watching television. I carefully logged the increasing progress of the disease. Between March and August, TIA’s occurred on 25 occasions.
The neurologist finally agreed with us that this was more than low blood pressure and ordered an EEG that ruled out a possible seizure disorder. They checked my heart with tilt table tests. “Your heart is great,” the doctor said, which was no relief because I was desperately hoping that at some point somebody would find the source of my problem.
Finally, the neurologist ordered the tests that, in retrospect, probably should have been conducted five months before, when I first reported my symptoms. He ordered three separate MRI’s that would examine my neck, head, and brain. On Friday, August 17, 2018 at Castro Valley’s Eden Hospital, Steven and I met with the neurologist. He looked at us and then told me, “You have a rare progressive brain disease called moyamoya.” He followed up the shocking news with the announcement, “I called another doctor, and he’ll be here in 15 minutes.” Then he walked out of the room, leaving us bewildered and confused.
When the specialist showed up and reviewed the test results, he agreed that I might have moyamoya, and admitted me to the ER where they administered an angiogram that confirmed the diagnosis. The doctor referred my case to Dr. Gary Steinberg at the Stanford Medical Center who is founder and Co-Director of the Stanford Stroke Center, Chairman of Neurosurgery, founder of Stanford’s Moyamoya clinic, and one of the planet’s foremost specialists on the condition.
On September 10, 2018 Dr. Steinberg ran tests and discovered that the vessels carrying blood to my brain were narrowing and collapsing. The channels on the right side of my brain were constricted to only 10 percent normal flow but the left-side flow was down to one percent. Two operations on each sides would be required to relieve the condition. One “direct” procedure would move a vessel from one part of my brain into the region where the blood vessels were constricting with the hope that the blood would begin to flow through the new channel. The “indirect” procedure would remove a muscle from one part of my brain and plant it in another part hoping that cells would multiply and provide another healthy alternate channel for the blood to flow through.
The procedures were scheduled six days apart. During the first one, scar tissue from an old automobile accident prevented the surgeon from rechanneling the blood vessels in the most direct course. As a result, the surgery, which had been scheduled for eight hours, actually took 13. Fortunately, six days later the two procedures on the left went much smoother.
I’m spreading the word; drawing people with the disease closer to each other and helping them become more aware of what is going on in their bodies...
I was hospitalized a couple days following each operation. My wonderful husband, Steven, stepped in to serve both as my caregiver and nurse. Since then, Steven has continued to be one of the few bright lights in this dark story. Managing the disease has been more complicated than we ever imagined it could be, which probably makes this more difficult for Steven than it is for me.
For a couple of months following the surgeries, they gave me medication to deliberately increase my blood pressure in order to force the blood through the new channels they had created. The challenge was to walk a fine line between pressure sufficiently elevated to effectively push the blood into my brain but not strong enough to cause a stroke. This required Steven to monitor my blood pressure every three hours for a couple of months and report the levels to Dr. Steinberg. Steven performed the task every three hours, 24 hours a day, seven days a week, for two months. I’m blessed to have a partner with such love, commitment, and energy.
Even though the first surgery was by far the most complicated, I had a much more difficult time following the second operation. I came out of the anesthetic with no ability to speak. It was several weeks before I was able to utter a sentence or a phrase and, even then, I would slur my words, sounding like someone who had recently consumed a half dozen martinis. I never recovered completely and to this day continue to experience minor aphasia when I speak, sometimes pausing briefly to think of the next word. For a time, I also lost the ability to eat in a normal fashion. Steven would tell me that I had food in my mouth when my brain was telling me that my mouth was empty.
I’m on disability from my position as a registered personal banker. But, even though I’m down with a disease, “couch potato” is not part of my character. Following weeks of inactivity, I felt the need to build up my strength, so I called Joe Garcia at Battle Fit Gym, where I had been a member before my illness, and told him what happened. Joe invited me to join a team of people participating in a program called Rock Steady, which is a workout designed to fend off the debilitating effects of Parkinson’s disease. I was attracted by the invitation because I had watched my father suffer from Parkinson’s. The team members welcomed me with open arms. I was so moved by their courage in attacking the debilitating effects of the disease that, after a few months in the program, I designed, ordered, and distributed to the others a black wrist band bearing the Rock Steady tagline, “Be better than yesterday.”
I will never completely recover from moyamoya but I am adjusting to the “new normal” that my life has become. I report to John Muir twice a week for physical therapy. I continue to experience periodic numbness, vertigo, and fatigue. I seem to be moving through life with less than half the energy that I had before the onset of the disease and can’t get through a day without taking a couple of naps. Thankfully, the persistent and horrible headaches following the operations are decreasing, and I haven’t experienced a TIA since January.
Doctors continue to monitor the progress of my condition. I recently had an MRI and an angiogram.
Dr. Steinberg reported that the results were all that we hoped for:
Your blood flow to your brain is doing great, you have more blood flow than before and the new graphs (vessels) are growing like they should and will continue to do so. No signs of strokes. The surgeries did what they were supposed to, and you are on your way to living your life again.
My goal in life is to help other people, when dealing with moyamoya or any similar disease, to find an easier path through the onset, diagnosis, and treatment than I had. I am trying to offset the mis-diagnosis and mis-communication that are regrettably typical of people who, like me, have had a more difficult time progressing through the disease than would have been necessary if we had only known at the beginning what we know now. I’m spreading the word; drawing people with the disease closer to each other and helping them become more aware of what is going on in their bodies and with the medical establishments that are treating their condition.
Last April 27, we sponsored a Moyamoya Awareness day at Battle Fit Gym to increase awareness, and raise funds in support of ongoing research at the Stanford Moyamoya Clinic. My four best friends, my sister, and husband Steve, helped host the project. A number of local businesses generously contributed resources to the event. We were impressed and pleased by the number of enthusiastic people who turned out. I was sitting with my daughters at the registration table when a young man in his early 20s approached us and asked me, “Can I give you a hug.” I was a little taken back, of course. But then he explained, “I have moyamoya too.” We learned that he had heard of the event and flew to us from his home in Dallas, in order to connect with us and with our positive efforts.
I’m reaching out to people like him wherever I can find them. We are providing the information and support to make the pathway through this disease easier for them than it has been for me.
Photos by Casey Quist