Hi everyone,

I'm new to this website as a user and have only been following it on and off for the last few months but enjoy the information and support.  My mom had a severe stroke in April due to a hemorrage in her brain.  The hemorrage was caused by Moya Moya.  She is now recovering, learning to walk and talk again and doing pretty good with lots of therapy.  We have been meeting with a neurosurgeon here in Detroit, MI...yesterday he told us she was not a candidate for surgery.  He said the blood flow seems to be good based on the Spect scan, however her corotid arteries have alot of blockage.  I'm surprised about the blood flow because her memory has gradually become worse over the last few years which to me would signal lack of blood to the brain, etc...
Now, here is what I'm thinking...1. If there is a blockage, shouldn't it be fixed?  2.  If she had the artery break and hemorrage, shouldn't surgery be done to support the arterial walls?  I am certainly not a Dr., but I don't have a good feeling about it and I'm concerned she'll have another stroke.  She is only 54 and has lots of living left to do!  Any thoughts from anyone?  It's nice to hear from others with some experience.

Thank you!

Hey Caili,

You should get a second opinion from one of the doctors on this website under Surgeons with bypass experience.  My wife had complete occlusion on the left side and almost complete occlusion on the right side.  She had the surgery and is doing fine.  

I think you are on the right track in questioning this and I would have her see someone quickly.

Hang in there you are doing the right thing, and good luck to you.

Wayne

Welcome to the MM website Caili.

...yes...go for it...second opinion.  I did the same and my daughter has had both surgeries....the second surgery helped her come back from the stroke she had on the left side right after the right side (1st) surgery.  And the SPECT scans she had in June showed the right side had a  20% blood flow and the left side about 60% blood flow...so they went ahead and did the  cerebral angiogram which showed...the 20% blood flow was actually from the left side for the right side as the right side was 100% occluded.  And the left side was starting to close...so we went ahead for 1st surgery on July 14, 2004...the stroke on the left side showed how fragile her cerebral circulation was....the second surgery was August 23rd....after few weeks of numberous seizures...I think we have it under contol...She and I have been sitting on the sofa...talking about so many things...such an awesome feeling to "have my Cara" back...she still has a way to go "healing"..re-learning..but the sunshine is streaming back in.

Second or Third opinions are heaven sent...ours was.

And keep asking all the questions...you ARE on the right track.  Will keep your mom in our prayers,

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Hi Caili. I am Nikki.I am very glad you found this site, and YES, GET A SECOND OPINION. My mom also has mm and had a massive brain hemorrage/stroke almost two years ago. At that time we had never heard of MM and it was mentioned after they did an angiogram to see why she bled, but we were never told for sure one way or the other and she was treated as a stroke patient. They also told us that there was no surgery that could be done to help her. My mom was only 42 and was in a coma for a month, from which she was never supposed to wake up. But she did and she got better until June when she had another one, this one even bigger than the first. We got in touch with Dr. Stienberg at Stanford and she had surgery done on both sides a couple of weeks ago and is doing pretty well, great actually considering all she has been through. I just wish we had gotten a second opinion after the first one, we just didn't know enough at the time. I hope this help and please keep us posted. How old are you if you don't mind me asking? You are more than welcome to IM or e-mail me if you want to talk about our moms or just talk. Good luck.                                                                  Nikki

Second opinion is a very good idea.  you can email some of the doctors listed on this site and send them her films and they will get back to you....but i would most definately get a second opinion.

hillary

ABSOLUTELY!!!!!!!!!

When our local docs suspected MM, they immediately had radiology load all of Sean's scans onto a CD for us to send to the specialist of our choosing.  

Time is important here ... get out your 'red tape' cutting scissors!!!!

Steve

Caili -

Absolutley you should get a second opinion.  Even if you were comfortable with the doctor's response and he/she approved surgery - it's always a good idea to get a second opinion.

To answer your questions....

1.  The surgery doesn't correct a blockage - there isn't really a blockage.  The blood vessels are narrowing - thus, there isn't anything to "unblock".  What the surgery does is it provides other ways for the blood to flow where it need to go.

2.  I'm not sure how to answer your second question as I'm not a doctor!  My advice is to explore the links page on this site and read as much as you possibly can.

Good luck!  You and your mom and your family are in my prayers!

-Shari

Hi Caili,

We too were told no surgery. We sought a second opinion with a doctor who specializes in moyamoya and were told my niece needed surgery immediately. The second opinion saved her life. So IMO, by all means, DO get a second opinion and preferably one who has experience with mm.

The mm blockage you speak of in your question is a irreversible blockage of blood and oxygen of the main blood vessels to the brain as they enter into the skull. This vascular occlusion (blockage) continues to progress and starve the brain of the blood and oxygen needed. The brain attempts to overcome this narrowing and subsequent reduction in blood flow by enlarging other smaller blood vessels, a process called forming “collaterals,” but surgery is usually the only alternative if the brain isn't getting enough blood flow. Their are several different types of surgery, and basically with the same goal, and that is to "bypass" the mm blockage and get the proper blood flow to the brain, instead of repairing the blocked mm vessels as you spoke of. I hope that made sense. That's why my other advise to you would be to continue to read all you can about mm, so you know the decisions you're making are that of the best informed information out there and the best surgery for your individual case. What we have found here on the website is, not all neurologists/neurosurgeons are as up to date as the mm experts.

You all are in our thoughts and prayers. Please keep us updated on her progress.

God bless,
Mar

Hello everyone again,

I am sorry I have not been able to respond till today!  I appreciate all your replies,they were all very helpful and supportive!  I took your advice and first emailed Dr. Scott in Boston.  He can only work with patients up till the age of 35 but was very helpful in referring me to another surgeon he worked with here in Ann Arbor at University of Michigan.  I am working to get ahold of him at this time, but he is on vacation another week (lucky!).  Our family Dr. also said he would give us a referral to anyone we need for insurance purposes which is wonderful.  It's so great to have people who understand and can be supportive and caring and I appreciate that very much.  My family says the same and my mom thanks you as well.  I will continue to update you on the progress of this.  I'm even more concerned and determined to get her more opinions after reading Nikki's email.  I am 25 by the way, so my guess is we are close in age!  Best of luck to all of you as well, you are all in my thoughts and prayers.  I will be writing more very soon.

Thank you again!

I'm so glad your making some progress.I will keep your mom in our prayers.
Mary Grace