Ha Nguyen
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Hi Chris,
There must be something for me to read your message, as I haven't visited this site since long time ago.
As other people suggested, you should have second, or even third opinion about your situation. For what ever result, be positive as you still have at least 2 years and should not just wait for some scared thing to come to you. If you are still working, pls reduce your workload and find way and place to relaxation for both your mind and body. Try meditation, breathing and light excercise such as taichi, yoga ("true one"), a healthy diet and peaceful, positive environment could also help. It's from my own experience after several years with Moyamoya.
It seems that we have some similarity. I did the surgery in May, the same year as you, also in the right side. I was studying at Vanderbilt when being diagnosed with Moyamoya, left side also have early symptom. I was checked by Dr. Mericle there and also had second opinion from Dr. Steinberg and third opinion from a very good Japanese Dr. at Duke Medical Center. They had different opinions then. Finally I flied to have the surgery at Stanford , partially because my relatives were in Cali and they could take good care of me after the surgery. Then I moved back to Vietnam, my home country. Eventhough my first year check up in Hongkong was good, the numbness still came back sometimes. I know that it's almost impossible for me to take another surgery in the State or regular yearly check up because they are costly and I also don't want any more surgery. Since then, I have decided to find way, other way to first cure myself, at least preventing the further developing symptom in the left side, and then helping people with Moyamoya, if I succeed. I stopped taking aspirins, they have side effects, and took chinese medicines instead, those have effects on blood circulation and continue with more excerises which I mentioned above. I changed my job, have studied traditional medicines, accupuncture,... and checked what I did on good days and bad days. I recognised that a busy and stressful life, heavy excercises, even running, little alcohol,... all make the symptoms come back. However recently, I have started to experience more numbness, my mind is also a bit blurred . (after the surgery, it became clear). To make the story short, I am still working on adjusting my life style, work and environment... There's always way out. Plse email me if you want to discuss. I'll keep praying for you.
Take care,
Ha
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