I can’t believe that my life is touched once again by Moyamoya.

I had bilateral Moyamoya surgery at Stanford over three years ago.  I was asymptomatic.  This past June I went to see Dr. Steinberg and all looked okay. 

This past weekend, my brother had a stroke and is still in the Queen’s hospital in Hawaii.  At first they took a CAT scan and said everything was okay, he could go home.  But he had trouble walking, so they took an MRI.  My Mom mentioned my Moyamoya experience and the doctor there confirmed that my brother has Moyamoya. 

My brother is currently nauseous and being treated with morphine because he has headaches.  Do you think he should be treated with other drugs for the brain swelling or possible blood in the brain?  He is on a blood thinner.  He is 46 years old.

He is on an IV because he can’t eat or drink.  Today he had four sips of water.  He can talk some but mostly doesn’t normally. His right eye swelled up.  He has had untreated high blood pressure for years.  The physical therapist sat him up today because that makes his head feel better but he can’t walk because of the nausea.

Do you know of a good neurologist in Hawaii that knows about Moyamoya?   

After stroke, how long does a patient wait after a stroke until they have surgery?      

Cynthia,
I am sorry to hear about your brother's diagnosis. On the Happy side congratulations on them recognising it so he can get a jump start on his treatment. He also has a great leg up on the situation since you have gone through the process. You will be a great resource to help in his struggles.

I don't know about the morphine effecting MM. I am allergic to it.  I also can't answer the how long to wait after a stroke since i was misdiagnosed for 6 months. I also don't know any doctors in Hawaii. I am sure if you contact Dr. Steinberg's team they may be able to help if you can't find one in the "surgeons with bypass experience".

Best of luck and stay strong for your bother!
Becky

Cynthia,

I'm sorry to hear about your brother's diagnosis, and am sure your entire family is shocked.  I hope he can be stabilized soon, followed by consideration for surgery(ies).

Does your brother live in Hawaii, or was he visiting there?  Unfortunately, many patients are referred to the mainland from Hawaii, due to less experience with moyamoya in general.  There is a neuroradiologist (Dr. Chris Neal) who is quite familiar with MM, but he's at Maui Memorial Medical Center.  Outside of him, we often get referrals from Dr. Tom Rogers and Dr. George Powell.  As you know, it is often necessary to travel for the ideal hoped-for moyamoya expertise.

Regarding your question of the wait period between stroke and surgery, a decision for that should be made on a patient-by-patient basis. 

Knowing that this must be a tense time for you and your family, I'll hope and pray for some good news for all of you - sooner rather than later.

Please don't hesitate to ask if you have other questions.  And, you know how to reach me at Stanford if you need a shoulder.

[smiley=hug.gif] Jill

Thank you for your replies to my call for help! 

Oh, this is a GREAT website!!!

I wrote to Stanford - Joli Vavoli answered once again.  You're so fast! I sent her email reply to my sister in Hawaii and she is going to give it to my Mom.  My Mom has been spending the night in the hospital to be with my brother. 

Jill - thanks for all of your support all over again.

Cynthia      

Cynthia,

when I had my 2nd bypass at Stanford in 2009, there were two sisters from Hawii who both have MMD. The elder sister had surgery at Stanford couple of years ago, then she accompanied her younger sister to Stanford for surgery. The yonger sister had the surger same day as mine and we checked out on the same day as well.  They lived in an outer island. I believe I still have their email address at home somewhere.  If I can find it, I'll pm you tonight. You might be able to find which doctor they were seeing in Hawaii.

take care,
LuckyMe