Diagnosis
It was October 13th when we visited pediatric neurologist, and the appointment of MRI was October 28th. In the meantime Kota had another seizure of numbness after laughing a lot. We got worried because Kota’s seizures seemed to be getting more frequent. But the MRI appointment could not be advanced because they said the schedule was too busy.
As time goes back a little, my wife found a very helpful website, moyamoya.com, and there was an expert neurosurgeon (Dr. Gary Steinberg) of Moyamoya disease in Stanford Hospital when she was doing internet search. There was a video clip about the doctor. Also some patients who had surgery by the doctor appeared, saying that they were so lucky to meet Dr. Steinberg and anybody who has weird symptoms should contact him. The doctor himself left a message, such as “please let me know if you have something wrong.” On moyamoya.com, Dr. Steinberg was admired very much by many people on the message board. Fortunately, Stanford Hospital is located at about 20 minutes drive distance from Sunnyvale where we live. Although I did not think they would accept first timer, I sent an e-mail to an address I found from the Stanford’s website just in case. I wrote brief self-introduction followed by Kota’s symptoms and a doubt about Moyamoya disease, and asked for any advise. Eventually I could make an appointment on the next day with a local doctor, but I was thinking I had to do something. A reply from Dr. Steinberg’s office came after several days, saying the doctor would be happy to see Kota if MRI showed Moyamoya. The pediatric neurologist we met on 13th also told us “I have known Dr. Steinberg for many years and actually have referred two Moyamoya patients in the past. So Kota would be OK as I would give a referral if necessary.”
Kota went to get scanned with MRI/MRA on Oct 28th. The appointment was 12pm. Both head and neck were scanned to take about 45 min in total.
According to the hospital, the doctor would let us know the result within 3 to 5 business days. However, I received a phone call from the pediatric neurologist right before 5pm on the same day. He said that Kota’s MRI/MRA showed typical images of Moyamoya disease. He also said “As I did not think it would be this disease, I am glad that you brought it up. You saved your son’s life.” Actually it was not too shocking for me, rather It was sort of good to be able to identify the cause of Kota’s symptoms. It was also because I had already collected a lot of information from internet and I knew that surgery could improve the disease. It was much better than knowing nothing. The doctor also said “Go to Stanford tomorrow. I have talked with Dr. Steinberg about this. Probably they will call you. You should pick up the MR data from the hospital it was done and bring them. Kota will have surgery sometime soon.” Everything was so sudden. But the next day was Friday. If I missed it, it would be the next week, and I had a business trip scheduled from that night to next Tuesday. I thought I had to go no matter what. Thanks to the doctor’s prompt action.
On the next day, I was able to make an appointment at 3pm. Dr. Steinberg was very nice and gentle, exactly the same as we saw on the video. Not surprisingly, his diagnosis was the same as previous doctor's, moyamoya disease. We saw the films, too. They looked like typical moyamoya vessels as even amateurs like us could tell. Although Kota did not take angiogram at that time, the diagnosis was confirmed.