Hello
I have moyamoya and the doctor tells me that I also have Cronic Fatigue syndrom(CFS) and I hope to come in contact with someone that have the same problems that I have. I have headache every day, I sleep 10-12 hours every night, and I can not work. I have not had stroke ore something like that. I live i Norway and my doctor tells me that it is not possible to do surgery. I only have moyamoya on my left side. The only help I get is medisine for the headache. I hope somone can help me?

Janni

Hi, Janni,

I hope you will consider getting a second opinion.  The symptoms you describe sound to me like they are directly related to the moyamoya.  There are surgeons out there who can help -- you just have to find one with enough experience to give you the best results.   You can find some names on the "surgeons with bypass experience" part of the message board.   Some people have had to travel great distances to get a doctor with experience (my husband and I traveled clear across the US, to take our daughter to Dr. Steinberg in Stanford, CA)

It sounds to me like your doctor is labeling your different symptoms (CFS, headaches) without much regard to the underlying cause of the symptoms (moyamoya disease), and the possible affects this could have on your health.

Our daughter, Daphne, probably had Moyamoya disease in utero.  She started having seizures at 3 months old, and had two strokes at 15 months old.   Doctors at the Children's Hospital of Philadelphia told us surgery was not an option for her, and said she'd probably have more strokes until she ultimately died.   Thank goodness, we were able to find this website, and to do our own research online.  We found two neurosurgeons who thought Daphne could have surgery, and one year ago, Daphne had surgery with Dr. Steinberg.  Instead of living about two weeks, as doctors around here predicted, Daphne is still around and is healthier and stronger than ever.

I hope sharing her story isn't scary to you.  I know that there are different levels of moyamoya disease, and that Daphne's case was pretty severe.  I want to reach out to you, though, and let you know that we've been in a similar place, and that there are doctors out there, and treatments out there, that can really make a difference.

Let me know if there's anything I can do to help.

Jenny

Hi Janni,

Welcome to our MM family!

I don’t know your specifics or why your doctor say’s you can’t have surgery, but I do know we hear that more often than we’d like, but we found that in many of the cases there was in fact surgical options. The doctor simply lacked the experience in treating this rare disease. As Jenny said, after seeking a second opinion with a doctor who deals with MMD on a daily basis and knows from experience the different approaches and options in managing this disease, you may find that there is in fact help out there for you.

I urge you to consider getting a second opinion. You can mail a copy of your films to an MM expert like Dr. Steinberg for this second opinion at no charge. MM is a progressive disease and doing nothing to treat it leaves a patient at high risk of a stroke.

Please let us know if we can help you in any way. You'll be in my thoughts and prayers.

Mar