[smiley=huh.gif] [smiley=huh.gif] :( :(i had surgery when i was just 3 years old i am now 19 almost 20 and i still suffer from strokes even tho i had surgery on both sides.  everyone keeps saying how after the surgery they are stroke free comletely and ièm not .  im also wondering if i had the surgery again if it would make me stroke free  [smiley=huh.gif]

I replied to your other post, not seeing this one, but in addition to what I said, I want to emphasize that this is a progressive disease. It gets worse as time goes on, so please get to an experienced MM neurosurgeon, preferably a MM specialist, ASAP. Surgery is the ONLY answer with this disease. Without successfull treatment to provide blood flow to your brain, you will continue to stroke.

In a world where so many doctors are inexperienced with this rare disease, you must be aggressive and get to a doctor that has the answers for you. Don't give up.

You'll be in my thoughts and prayers.

Mar

I agree that you should be talking with either Dr. Scott or Dr. Steinburg, who are known to be experts at Moyamoya.  Dr. Scott, our doctor, told us that rarely a MM patient will need to have a 3rd surgery to revascularize the back part of the brain.  He also told us to be very careful about keeping our son, who has MM, hydrated and his blood pressure stable.  Normally these things shouldn't be concerns, but certain drugs can reduce blood pressure and/or cause dehydration if you don't take in extra fluid.  Because of this, you may consider speaking with pharmicist and/or doctor who understand MM before taking any new drugs.  

thank you for the advice

Hi,

My first question was to ask what type of surgery did you have?  However, reading that you were only 3 years old, I am guessing that you had an EDAS?  on both sides?

To hear that you're still having storkes, I would highly recommend you seeking opinions about your condition from a MM specialist.  DJ, the creator of this site, and many of the members here, have sought the medical advice from Dr. Steingberg.  Others have gone to Dr. Scott, Dr. Conolly, etc.  I personally chose to have my surgery done by another MM specialist by the name of Dr. Takanori Fukushima in North Carolina.  To me, I encourage those who seek my advice to obtain the opinions of all MM experts they so choose to.  From there, they can take into consideration their own personal situation and make a decision from there.  For me, I based my decision on the MM experience/cases, research of each specialist.  I also have to be fair in mentioning that I did not have "a lot" of time to decide and had to have an "emergency double by-pass and EDAS."  In fact, I was turned down by neurosurgeons who felt they could not perform the surgery.  I was disappointed back then, but I have a greater respect for them for their honesty in acknowledging their limits.  :D

I just spoke with another resident of Hawaii that had her surgery a couple of years ago and is still having symptoms/strokes.   :-[  And my advice to her was the same...send her most recent films out for opinions from MM specialists.  

The type of surgery one chooses is also important (taking into consideration other health issues).

I have also met another person here in Hawaii who has had to have "corrective" surgery from another MM specialist, so anything is possible.  :-[  We are all human....and have to pray for the best.  The sooner you get the medical attention you need, the better.  [smiley=hug.gif]

Hope this helps.

Take care,
Shan

There's a previous thread titled

"TIA post surgery: 6 YEARS POST surgery"!

you may want to check that out...  ;)