A DOCTOR AT THE KU MED CENTER IN KANSAS CITY TOLD ME THAT I HAVE MOYAMOYA I HAVE 1 ARTERY IN THE BRAIN THAT IS 90% BLOCKED AND HAVE SOME VESSELL FORMING BESIDE THE ARTERY THAT IS BLOCKED (PUFF OF SMOKE) I HAVE HAD THE DOBBLER TEST THE MRI/MRA AND ANGIOGRAM WITH NO OTHER BLOCKED VESSELS I AM ON AGGRENOX TWICE A DAY BUT LAST WEEK AT MY APPT WITH HIM HE DOSENT WANT TO DO ANYTHING UNTIL SOMETHING ELSE HAPPENS I HAD A STROKE BACK IN DECEMBER AND I AM 34 YOA THE ONLY THING THAT OCCURED WAS DIFF SPEACH FOR 2 DAYS ALL OF THE OTHER DOCTORS AT KU ADVISED I NEEDED A STINT PUT IN THE ARTERY THAT IS BLOCKED BUT THIS OTHER DOCTOR DOESNT WANT TO DO ANYTHING WE ARE SO FRUSTRATED AND THE NEUROSURGEN TOLD US HE DOESNT FEEL I HAVE MOYA MOYA SO ONE DOCTOR SAYS I DONT AND ONE SAYS I DO I WOULD LIKE SOME HELP AND WHO I SHOULD CONTACT REF ANOTHER OPINION APPRECIATE ANY HELP PROVIDED

Getting an opinion from either of the two surgeons listed above is a GREAT idea.

You can reach Teresa Bell-Stephens, RN,CNRN who is Dr. Steinberg's incredible nurse at:
(650) 723-5575
teresab@stanford.edu
tbell-stephens@stanfordmed.org

Hope it all work out well for you.

Linda (LA) a mm surgery survivor since 2000!

I personally have experiences with KU and the neurosurgeons and neurologist with regards to Moyamoya. I also suggest a second opinion by a moyamoya specialist.

Reagan

Welcome to the moyamoya family.I totally agree 100% with everyone else.Another opinion is definatly the best idea.Please don't wait.....my daughter was diagnosed in Jan 2002 and had suffered several strokes, one being a very dissabling stroke by mid April of that year.There's no way to know how quickly it will progress or how devestating the next stroke will be.the only sure thing about this disease is it WILL progress.Please keep us posted.The specialists that have been named are very caring Dr.'s and will for sure give you a definate answer and will give you the best advice on your next step.
Mary Grace

Just wanted to thank all that had responded to my question of poss diaganois of moyamoya i had the films sent to dr steinberg at stanford just waiting for a response hopefully wont take to long thanks again for all of the support and information you provide on this message board

Darci,

I took the advice from this board just a month ago.  On St. Pat's Day we heard back from Teresa at Stanford, and as I sit here and type this out, I am in the Guest Services area of Stanford waiting for my husband to recover from his angio.  His surgery is scheduled for Wednesday.  My husband's doctor in Chicago wanted to wait and see also (he had a stroke and surgery on one side in December), but his other side was 80% blocked at that time.  I didn't want to wait.  I had to convince (through the replies I got on this board) him to get the second opinion.  I am really glad I did.

If you don't hear back in two weeks, I'd call.  The techs were telling my husband that Dr. Steinberg is the busiest guy in the hospital.  I had to call, and Teresa called back the next day with the news.

I hope all goes well for you!

Shari

Hi Darci,

Your feelings are real and most MMers have experienced the same. It's only natural to be frightened before any major surgery and especially of the unknown.

The more you know about the disease and treatment options and the more you hear from other MMers who have traveled the same path, it will help you to put things in perspective.  It's easier to take the journey when you know what to expect.

My brother had two STA-MCA's at Stanford in May of 2005. We were at Stanford for three weeks.  Keep in mind, he had two surgeries a week apart. The testing prior to the surgery takes several days. So the time frame you mentioned for testing, surgery and recovery seems the norm.  Also, if you are flying to Stanford, you will want to know all is well after your surgery before flying home.

My brother was very nervous and anxious before his surgeries. In an effort to calm him, I reminded him he had already had two strokes and a dissected right upper internal carotid artery and the surgery would not only put him on a level playing field, in terms of having any future strokes, but that the surgery is to correct the problem of the narrowing and closing of the carotid arteries by bypassing them.

It helps to try to put it all in perspective by learning about the disease and realizing the surgery is the treatment to correct the problem of little or no blood flow, depending on how blocked the carotid artery is. I kept telling my brother that blood flow does wonders for the brain. The brain is being starved of the oxygen it needs due to the blockage.  Again, the surgery corrects the problem by getting immediate blood flow to the brain.

Not to minimize your emotions, like I mentioned earlier, those emotions are real. Remember you have the moyamoya family supporting you. Others will most likely share their journey too. Other Stanford patients will most likely let you know if the timeframe you mention is about the norm for them.

Please ask any questions and come to the board, even if you just need to talk.  This is a support group and a great MM family who will help you through this anyway they can.

You hang in there and keep us posted.

Hugs,

Lore      

Hi Darci

You are definately on the right track. Good luck and keep us posted.

Mark (Luca's Dad)

My daughter had her bypasses last nov. and I stayed at the HOME apts for almost 7 weeks and they are just great there. It is quiet and very convenient. I loved it there. My daughter had several strokes with the surgeries and she was in the hosp. for 6 weeks. The HOME apts take donations also and I have already included them in my yearly donations. It is a wonderful place with wonderful people.
                          christie