Hi,
     I would like to know if anyone else is having the same issues as me?  I had a minor stroke in 2004 and thankfully I am ok. I had only 1 surgery last May 2006. I am still experiencing TIA's. Will these stop or get worse. The stroke specialist told me that I have had these symptoms and have not had a major stroke. He also told me that I had the surgery and there is nothing more that can be done. Please help me to understand.

Lara

Hey Lara,
The first thing I would do would be to find a new doctor!! One who is tuned in to MM and a SPECIALIST IN THIS FIELD!!! Not one who is going to ignore your worries and questions. Get in touch with one of the experts on this board by email with your questions and then follow up. MM is not a disease that can be ignored so while it was very lucky that you have got away with no damage from stroke(s) you have had, no one can tell you that the next one you have will not do you serious damage if it doesn't kill you. As it is constantly stated on this board it is a progressive disease and will keep getting worse without preventative surgery.
If you are still experiencing TIA's in my mind you are still having problems and you need to do more to protect your future health by not ignoring these symptoms you are experiencing. No one can tell you if the TIA's will stop or get worse, but my logic says I would not be prepared to risk my health and cross fingers that they may go away!
There are other options that can be looked into so there is always more that can be done. This is where it will be vitally importatnt to find a doctor who is willing and passionate about what he does and is prepared to leave no stone unturned in getting you answers and fighting for your wellbeing. Don't sit and wait for the next TIA to come along as it may be a stroke that you don't recover from!

I had a minor stroke in 2001 and I was very lucky that I fully recovered with no damage but luckily my doctors had enough concern about me to follow through and they did 2 STA MCA's and found that I was a time bomb waiting to explode if I had ignored the symptoms and they hadn't been what they are - exceptional doctors!
Both my neurosurgeon and neurologist walk on water in my eyes and I have  a GP who always follows up on everything.
Your guy is a "Stroke Specialist"?!!! Give him the big A as fast as you possibly can!!!!
Moira

Hi Lara,

I’m sorry to hear you’re still having TIA’s over a year after your surgery. Perhaps it’s taking longer for you to establish the proper blood supply, I dunno, I don’t know your specifics or even if the surgery was successful, but in all honesty, I have to agree with Moira. A lot can be going on right about now and none of it good with this disease. It’s very scary to me to hear that ANY doctor on earth would say, “You’ve always had stroke like symptoms and have not had a major stroke yet.” That freaked me out. ANYONE will tell you that a TIA is a sign of a serious problem and should NEVER, EVER be taken lightly. A TIA means the blood supply to your brain is interrupted and even though it’s temporary, it’s serious and there’s a reason for it. The danger is that the next time your blood supply is interrupted; brain cells could die and cause permanent damage, possibly that major stroke. (God forbid!)

I’m sure you know this disease is progressive, so IF this disease possibly progressed to the other side, you may very well be at risk for a major stroke even though you haven’t yet. You would think your stroke specialist would know all this though, so I don’t get it at all!! The statement that “nothing more can be done” bothered me too, because I’m sure you also know there are proper tests that can be done to answer all your questions. Did you have follow up testing after your surgery?? Did you have a post-bypass Angiogram to evaluate the results of the bypass, or did you have a Xenon CT scan and other studies to assess any improvements in the blood flow??? 

All I can say is… please contact a doctor that knows MMD ASAP. Then you should get all your answers. Your doctor now, quite frankly scares me.

Good Luck. Keep us posted. You'll be in my thoughts and prayers.

Mar

I don't know the percentage for adults but for children under the age of 7 it spreads to the other side within a year to a year and a half in 40% of the children that have Moyamoya. That's what I was told by Dr. Scott's office. You definetly need to get checked to make sure it hasn't spread to your other side.
Thanks,
Lori

Lara, I had a stroke in 2002 that caused me to loose just my peripheral vision on the right side and also weakness on right side. I had revascularization by-pass surgery in 2003. This was done at the University of Iowa City. The reason I mention this is because a Dr. Adams who checked me for my stroke when all this happened is known world wide as an expert on stroke. Keep pushing for answers and get that second opinion

Take care, Sharon