We do not currently have a neurologist for my son.  He had surgery at Stanford in April.  We went back for the six month check and were told that we can get by with a good primary doctor and no neurologist.  He has so many problems with headaches still though, and his primary doctor is a pediatrician who is afraid to do anything much for headaches.  I am unsure as to what my next step should be.

Should we keep trying to find a neurologist?  Should we move him to a different primary doctor?  He is 17 so it wouldn't be a crazy idea to find him an adult doctor.  Is there a different type of doctor who would be helpful for finding some help for his headache?

Thank you all for your thoughts.

I would reccommend finding a neurologist also, prefferable with MM experience ( if they don't you can always bring them some good information). Of course the obviouse being this is the best doc to deal with headaches. My daughter is 10 yrs post surgery and she still sees a neurologist. I think it's important to have that contact with a neurologist who can get to know your child and MM disease. If you ever have any complications down the road you actually ahve someone to call and even see your son in the office or the ER if need be. It's very difficult to go to the ER and see a neurologist who has no background with your child or to get an appointment with a neurologist quickly if your not already established with one.
Mary Grace

I agree about finding a neurologist you need a doctor that is experienced and possibly worked with other patients who have Moya-Moya and other things such as headaches and other head related issues.  Peditricians might know about the disease but don't have the experience.  My daughters' neurologist actually passed her to the neuro-surgeon and that is who we see when we have questions or have a follow up appt.   In fact our neuro-surgeon said that any new medicines or procedures that your daughter needs, has to be cleared through me first.

Lynn,
I am so sorry that you have to experience a bad doctor. I went through a similar experience before I was officially diagnosed with MM. I was got a migraine and went to my old family practice doctor. She prescribe me a medication that people with MM should avoid but since I was unaware of the MM I took it. Then I has a stroke.When I had my stroke I only presented full stroke symptoms for less then 5 mins so my husband and I passed it off as something else and didn't go to the hospital, but back to that doc. That doctor said I was faking the residual effects and said I was being a baby about it to my husband so he requested to see another doctor in the clinic. That doctor said get to the hospital now because I had a stroke. The neurologist at the hospital confirmed the stroke but could not tell were it came from. Six months later of testing to try and find the cause of my stroke she sent me to get a 2nd opinion. That doctor said MM but when I went back to my neurologist, I was told that it was impossible for me to have it since I am not Asian. So I went to the Mayo Clinic in MN and that neurologist said MM too. Well I switch doctors then. The Mayo neurologist recommended a neurologist closer to where I live that has good experience in dealing with MM so I am seeing him for all my followups. So what I am trying to say is that you are not alone. You will find the neurologist you are looking for it may just take some time. I reported the family clinic doctor who called me a faking baby to the .... I am forgetting the information but I got the number from my insurance company.  There are some bad doctors who seem to be so full of themselves that they are unwilling to work with others who may have more knowledge then they do. I hope you can find another neurological clinic to work with and some other doctors who are willing to learn. Stay strong and keep moving forward. One day you will look back on this and be proud that you never gave up.
Becky

Hi... Can you travel to Florida?  Bathia in Miami Childrens Horpital... My daughter is with same doctor since 2003.