Hello Paige

Yes, I can relate to your situation completely as my son, William, experienced a similar situation a couple of years back.  I'm sorry you've not received a reply to your Aug 10th post yet, everyone must be on vacation.  I have just returned from Florida visiting Willy, and yes, truly there is anxiety whenever we think of Moyamoya.

Two years ago Willy, 40 years old, was walking through WalMart when he had a stroke, not a fall to the floor stroke, and he made it back to the house before he fell into a twilight state on the bed, where he remained for two days he said.  His dog finally made him alert enough to realize something was seriously wrong and he managed to drive the couple of miles to the ER.  There a doctor suggested he have an angiogram, as he had read Willy's medical history and discovered he was a Rubella baby who was born with a patent ductus and had had surgery at 1 year old.  At that time I'm guessing he had no obvious moyamoya symptoms, and I've read it was in that time period when they first were discovering moyamoya disease.

We did a search and located Dr. Robert Mericle, a specialist in Nashville, and flew there ASAP for his first angiogram, which immediately revealed Moyamoya disease.  There was a short discussion and we scheduled his first surgery, the right side which was worse, and returned to Nashville in a few weeks to have it done.   We scheduled the second surgery in 6 months.

Willy is strong and made a recovery from the first surgery quickly and went back to limited work as an auto mechanic.  Soon he was having vision problems in the left eye and some photophobia so he left work and prepared for the next trip to Nashville.  Surgery went well again, but Willy's anxiety was rising as was his blood pressure, and some headaches began.  And continued, and that is where we are today.

I am currently searching the web for moyamoya and headaches and it is not encouraging, which is borne out by more headaches, loss of energy, and he's in a constant state of anxiety and worry.  He's arriving tomorrow for another angiogram in Nashville.  Our plight is straightforward, what can we do to alleviate his headaches? 

The literature is not encouraging, headache is nearly always mentioned during the recovery phase, which now has lasted for months, with little mitigation of headache pain.  If anyone can direct us regarding this problem, please do not hesitate to present it, as I will wager I'm not alone in this situation.

I've not whitewashed this report, but since every individual is remarkably different with regard to Moyamoya Disease, I think it wise to learn all we can as quickly as possible, and this forum and others like it are where to begin.  I'll post some references shortly, and please let us know how you are doing.

My best wishes to you as you make your way,

Peace

Charley, Williams father, 77, Lancing, Tn.