After Diagnosis
In the afternoon on October 29th, we continued to discuss the treatment strategy in the consultation room. We had investigated the track record of Dr. Steinberg on internet in advance. Thus, we knew he was an expert of stroke and moyamoya (MM) disease with extensive experience and he has been doing MM surgery mostly of so-called STA-MCA, which is direct bypass artery. Since we thought direct bypass would be better, we were going to ask him for Kota’s surgery. But we asked some questions before deciding. Please note the conversation below is not exactly what he and I said, but just something like that.
Q: Is surgery the best way for Kota?
A: Yes
Q: How many cases of MM have you treated?
A: I have done about 240 cases of surgery in the past 20 years and about a third were children
Q: Were there any unsuccessful cases?
A: Basically no. There were a couple of cases that the patients had stroke after the surgery. Success rate would be 97% or so. Especially in case of kids, basically it has been successful for all the cases.
Q: As you know, MM is more common in Japan and there are many experts there, and we are Japanese. What do you think about going to Japan to have surgery by some expert there?
A: If you prefer doing so, it would be fine. But I often meet with Japanese doctors and I believe there are only few doctors who have done more surgery than I have.
Q: Will Kota come to the hospital on the day of surgery?
A: Yes.
Q: How many days is he going to stay in the hospital?
A: Usually, they go home 3 or 4 days after surgery.
Q: When can he go back to school?
A: Many kids go to school after a week.
Q: When can he restart sports activity?
A: If everything goes well, he could start physical activity after about three weeks.
While it may look like a typical authority’s comments, Dr. Steinberg told us very kindly and gently, which made us decide to ask him for Kota’s surgery. Kota seemed to like him, as well. The arteries that cause MM are running near ears, both left and right sides of head. To fix both areas, MM surgery is usually carried out twice. The doctor immediately talked with the nurse to decide tentative schedule of the surgery. To our surprise, the first one was November 12th, only two weeks ahead! And the second one was one week after the first one, the 19th. Actually it was good because the following week was Thanksgiving week and the school had only two days. To this end, there would be angiogram and SPECT examinations during next week. They said the schedule would be notified in the beginning of the week. To be honest, we were surprised to realize the fact that everything was decided within only a couple of hours of the very first visit. But the earlier is better as far as the diagnosis has no doubt.
On next Tuesday (November 2nd), when I was waiting for a flight to California, I got a phone call from Stanford. They said angiogram would be done tomorrow (11/3), and two day SPECT exam would follow (11/4 and 5). Another message was left during the first flight, asking if it would be OK to reschedule the second surgery from 19th to 24th (Wed) because of the availability of the operation room. Thanksgiving weekend would start from the next day. We were fine with it, only if the hospital staffs were OK. I asked them to send a bunch of documents to my work office, and picked them up on the way home. Also I informed my boss and colleagues of what was going on by e-mail, since it was late at night. I am working as a scientist for a biotech start-up in Bay Area. As a start-up, company benefit may not be as good as well established ones, but we are given 20 days of vacation time a year. And everybody would warmly understand such a family emergency. Fortunately, I was able to work in very flexible manner
I wrote a letter to the Principal and Kota’s teacher of his school on the airplane, explaining what happened since last Friday. They had already known something wrong might be going on because Kota had to leave the school early several times in October because of examinations and hospital visits. Since the diagnosis was finalized and I figured out how long Kota would have to leave the school, I thought I should let them know.