Hi Betty

It is nice to find a site with people who know about MoyaMoya.  I live in the UK and not a lot is known here about it.  I was diagnosed in 1980 and have not had surgery.  I have had 2 bleeds first in 1980 and the second in 2002.  I too am reluctant to have surgery because I've always been told its too deep but would not advocate this decision I think you should try to talk to a MoyaMoya specialist about you own personal circustances.  Hope it all goes well for you.

Hi Betty and Bev,
As Becky stated, you need to find a neurologist and neurosurgeon who has a great deal of experience with Moyamoya - the more experience, the better. Surgery is not always immediately recommended for every one who has this disease. It depends on whether the person is having symptoms, such as TIAs, stroke, mental decline, physical problems, like stuttering, weakness, fatigue,.. and also upon the results of special tests that are done to determine what the blood flow is actually doing - is it getting to all of the brain, what is it's reserve capacity. Even if your doctor determines that the surgery is not needed at the present time, he will need to monitor you regularly (usually every year), as the disease is progressive.

The only reason I can imagine that a doctor would say the Moyamoya is "too deep" for an operation, is if he was planing to stent the blocked artery. The one slide I saw at the recent International Symposium for Moyamoya that will be forever in my mind is the one that said in large red block letters Every Moyamoya patient who had an artery stented died. The revascularization STA/MCA surgery that most of us talk about here is not performed in the deep tissues of the brain. It is done very near to the surface of the brain.

Please send your films to Dr. Steinberg at Stanford Medical Center in California for his opinion. If you can not have the surgery done there, ask them for a referral to a neurosurgeon in your area. Your life is precious to you and to those who love you. Don't  let this disease take it from you. You can beat it.
Kim

Betty and Bev,

Please please please listen to Kim.  She knows what she is talking about. 
I was told in 2005 by a vascular neurosurgeon to never let anyone perform surgery on me to open my internal carotid arteries for any reason.  I would most likely have a catastrophic stroke and die.  I beleived him for three years.  He never even diagnoses me with MM, he just told me that the occulsions were from an old stroke and that I did not need any treatment.  Last year I had another stroke, minor with not perminant damage.  I was sent from one specialist to another and back again.  Still no answers, no one new what to do or what was wrong with me.  Finally in March of this year a doctor in Chicago diagnosed the MM and I had surgery at Stanford in April.  There was a doctor in Indianapolis that told me I may need a bypass surgery but he was not sure and did not diagnosis the disease.  I told my family that there was no point in going back to see him becasue I would never let anyone operate on my brain.  Never say never, after I finally was given a diagnosis I did as much research on MM as I could and sent my images to 4 MM specialists.  They all said the same thing, you need bypass surgery.  While all of this was going on I had another stroke.  It was in early March.  Again there was no perminant damage.  I decided that it was time to do something before I had a really bad stroke and ended up a burden to my family or dead.  I had my surgeries in April of this year and am doing great. 
I am also a registered nurse and have spent many hours learning as much as possible about this disease.  I have asked Dr. Steinberg's nurse, and it is true, all patients with MM will eventually need surgery or they will have a catastrophis stroke.  The trick to living with this disease is to stay one step ahead of it.  Have the surgery before you have a really bad stroke or a homorrahge that causes you serious harm.
The statistics prove that stents do not work for MM patients.  The surgery that is done is performed on the surface of the brain.  Kim was exactly right. 
I hope that you both listen to what we are telling you and go see a MM specialist.  I wish you both the best of luck, and remember we are always here for you. 

Tracie

My original diagnosis in 1980 was MMS so I don't know if that has made an impact on the no surgery decisions that have been made by my neurologists over time but I do agree you need to talk to a neuologist who is familiar with the condition as the advice off one who is not can lead to further complications.

Hi Mar

Not MS but MMS (MoyaMoya syndrome).  I was lucky in 1980 that I was seen by someone familiar with the condition.  It was in 2002 that that the diagnosis was questioned but an MRI scan confirmed MoyaMoya.  I think it was questioned as I hadn't had any other problems related to MoyaMoya.  I think my current neurologist is familiar with it thats why he questioned the original diagnosis.

Bev

No worries.  Thanks for your thoughts and prayers.  I am thankful daily to be a survivor.

Betty and Bev, 
  Please take the advice of Mar and the others you have heard from. I had to suffer a major stroke in 2002 before I found out I had mm. I lost peripheral vision on the right and weakness in the right side. I was lucky not to have anymore damage. I had indirect by-pass surgery in 2003. It was the best decision I ever made. I just celebrated my six year anniversary this month. Oral medication is not going to stop this disease. Surgery will lenghen your lives. I know that you are both scared as I was. I was told at the age of 51. You both have your age going for you. Don't wait.

Sharon

Hi Tracie

Congrats to your ne baby,  we have the same feeling until now I had not been through surgery. I recently, went to my doctor for check-up she gave be another medicine which is "sibilium" coz I'm complaining my head.  I feel sometimes my is "shrinking" and feeling with muscle spasm. :( anyway,  but I took the advise of Kim and the rest of the  guys. Well for me come what may, as long as I feeling well, dont get mad, stress, pressure I gave up my work already and stayed at home reading, watching TV, listening to radios following my doctor's advise to relax and cool, chill and happy on whatever I'm doing right now.
And not but the least, Prayers of course.

Regards to all,
Betty :)