It has been one year today since my son had his first surgery with Dr. Steinberg.  The year since has been long, but good.  I thank God for his protection of Daniel as we worked so long for a diagnosis. 

He still suffers constantly from headaches--we have found a neurologist willing to see him though.  She seems eager to help him get his pain under control, so I have faith that we will eventually find a measure of relief for him.

Hi Lynn,  so glad the surgery went well and he's had a good year.  Seems a lot of our kids suffer with headaches.  It's so hard to watch them try to have a normal life when they have chronic pain.  Destin still suffers with them.  Her doctor put her on Zimpat which has helped a lot.  Now she just gets a really bad migraine about every 10 days.  She graduates from high school soon and I had really hoped they would find a way to keep them at bay.  I hope your sons neurologist can help him with his.  How old is your son?

Daniel is 17.  It is very frustrating for him to still have the headache.  He was hoping that it would be gone after surgery, instead it has intensified.  I tried to find information about Zimpat but it looks like a seizure medication.  Is it?  We were in the hospital a couple of weeks ago for a 48 hour video EEG because it seems like he is having some type of seizures.  The EEG looked fine though.

Lynn, my daughter just turned 18 this month.  The surgery didn't get rid of her headaches either.  Her surgeon told her he couldn't guarantee that it would.  At least she has blood flow now.  Vimpat is a siezure med.  Apparently they are used a lot for migraines.  she's been on Topomax and Keppra.  The Keppra worksed but it made her very angry.  One of the side effects is nicknamed Kepprage!  The Vimpat is working better than anything else she has tried without the side effects.  If you have any questions you can email me at djinkster@aol.com.  Just put moyamoya in the subject line so I know it's not spam.