I am 5 years post-op from EDAS surgery on both sides.  I went back to work and did okay for a while.  Since December I have been having massive headaches and pressure.  My neurosurgeon didn't want to see me for a long time saying it was nothing.  I finally made them give me an appointment and saw him on Monday.  He is very concerned.  he has ordered an MRI and an angiogram.  And not to go back to work until we have answers and maybe never. 

I am scared and don't know what to do now.  I have filled for state disability and will be looking into permanent disability.  I live in California and I just turned 40. 

I can't live like this for the rest of my life.

Any advise or thoughts would be helpful.

Thank you

i guess youve just got to take one day hour at a time.i get headaches constantly,it can be debilitating,water sometimes helps apparently, but hang in there,you'll be ok, it sucks having too much time on yr hands tho, distraction is sometimes next to godliness.
regards steve

Affee,

What happened since your entry?  Are you alright?

Hello Affee......
Perhaps my son Willy will see this and write you.  He is 43 now, and two years post surgery both sides, but still gets terrible headaches.  He worked for a while too, but had to let it go, as there were many things that made the headaches worse.  Like the bright sun would cause terrible pain.  Dr. Mericle in Nashville has done angiograms on Willy and sees progress but it is slow he says.  It's been quite a shock to Willy too, it's really a terrible situation.  Good luck to you.....
charley coryn, lancing, tn.,

Greetings to you all.....

I wish to update you regarding this subject as my son, Willy, age 44 now, has just completed open-heart surgery, where they found two arteries clogged, and a faulty valve.  It has been three years since his surgeries for moya-moya.  Willy had been complaining for awhile about various problems such as indigestion and heartburn, excessive burping and stomach pains, until finally a doctor decided to do the test for heart problems and found out his condition.  Willy is deaf from birth, a Rubella syndrome baby, and was operated on for Patent Ductus at 9 months, but was not diagnosed Moyamoya until he had a stroke in 2014.  Willy is recovering now and doing well, and I'm very anxious to see what effect the increased bloodflow will have on his behaviour.  Recently he said that the headaches and the pain from sunlight have lessened somewhat, and hopefully that will continue.........

Please feel free to contact me at corynski@yahoo.com if you have any questions I may be able to help with.