Judy - Did they do any tests??  MRI?  CAT Scan??

-Shari

Hi Judy,

IMO, you need to get to a neurosurgeon/neurologist ASAP. If I remember correctly, you were diagnosed with moyamoya a while back and have not sought any treatment, or even found a doctor yet, is this correct? I have to urge you to PLEASE, see a doctor who knows what they're doing concerning mm, because YES headaches are very common with mm. You may not be getting the proper blood flow to your brain and you need to seek help from a professional who deals with mm and can help you ASAP. Please read all the info you can here on the links and you'll see that you should not wait around with this disease.

Mar

   A lot of us went to surgeons out of our insurers area.It may take some fighting but there are ways to get them to cover it for you. Especially ifg there are no surgeons with experience in your area.I agree PLEASE don't wait. where do you live? Maybe someone can help you find a surgeon not too far from you.Please keep us posted and know you are in my prayers.
Mary Grace

Judy,

Is having such a bad headache uncommon for you usually?  As Mar suggested, headaches are a common symptom with MoyaMoya but if you don't usually get them and this one is severe, I would be concerned if there is no other reasonable cause for the headache.

Did they give you anything at the ER for it?  Did they have any answers for you at all there?

As others have written, please put pressure on your neurologist to find a neurosurgeon within your health plan asap!  Or, contact the patient advocates at your local hospital to help you.  If you show up at a hospital ER, they MUST by law provide health care for you whatever your health insurance situation might be.  OR, they MUST direct you to an alternate hospital that does accept your insurance.  They can't just turn you away if you have a life-threatening situation.  I have found out the hard way that we, the patients, usually have to really step up to the plate and fight for good health care and we can't rely on the doctors alone to look out after us.  So, please, stress to your neurologist the urgency of this matter!  If he/she can't help you, find out who can.  Have you looked at the surgeon list on this board?

I hope your headache is relieved very soon!
Lisa

Not to worry you, but I was having horrible headaches.  The doctors ran MRI's and said that it was just migraines and put me on migraine medicine.  Well. . . migraine medicine constricts the arteries in the vessels in your brain.  That very day that I took the migraine medicine, I had a stroke!!!!  Only after the stroke, I was sent to Dallas for an angio and then found out that I had MM.   Please don't wait!!!  You never know,  it can be as simple as tension headaches or something very minimal, but as in my case, it could be something very life threatening!!!  Please find out all you can and I will pray that all gets better for you.
Laura

Hey everyone i just got back from Philly Einstien Hospital and my neurologist said for know he thinks the headaches are not life threatning but i am going to get another angiogram to make sure.

Is your neurologist familiar with MM because (HUP) The University of Pennsylvania hospital is very familiar with it and sees alot of cases. I do not recomend surgery there but the neurologist are very familiar with the disease, and will know how bad the blockage is.
                            Nancy
                 

Thanks.
My second angiogram is scheduled August 31st at Einstien Hospital in Phillidelphia.