Hi... I was wondering if you've seen the section on this board where people post about their moyamoya surgeons.

It's on the main page of the moyamoya message board, right under "moyamoya related information and support" and is called "surgeons with bypass experience"

I saw that someone there posted a good review of Dr. Dauser, at Texas Children's, and there were a couple of other doctors in Texas who were mentioned.  I'd definitely go to one of those doctors ASAP for a second opinion... a year to wait for a diagnosis is just ridiculous. If Dr. Steinberg thinks your daughter has moyamoya, then I would bet that he's right (he did my duaghter's surgery this March)

How is your daughter doing?   I hope she's feeling better.   Good luck, I really hope you're able to talk to a good doctor with mm experience soon!

Jenny

Tracy,

I saw a nuerosurgeon here in the Washington, DC area after I was diagnosed with MM and was told the same thing.  I'm already grown and was having active TIA's.  This is not the response that you should want or get.  If your daughter's neurosurgeon was indeed familiar with MM or a specialist in MM, then he/she would know better than to give that kind of response.  This is NOT a wait and see type of disease.  I'm with Jenny on this......if Dr. Steinberg believes your daughter has the disease, then he is more than likely right.  He did my surgeries.  You shoud act as soon as possible.  Get a second opinion if you need to, but if I had Dr. Steinberg's opinion, then I would not go for another one.  And if you had an MRI on your daughter in December of 2004, then she should not need another one now.  When was her last angiogram? 

And you are right, Tracy.  DO NOT wait for her to have a seizure or stroke before taking care of this.  I was told by Dr. Steinberg that if I had not had the surgeries, then I was on the verge of having a major stroke that could have been debilitating.  And if I had followed the neurosurgeons advice of waiting and seeing, then I could have had a lot of problems from a major stroke or not even be here today.  I encourage you to read the following article http://www.wgrz.com/news/news_article.aspx?storyid=26780

Also, it is important to know that your daughter can have moyamoya and have problems and then go for awhile without any problems only to have them come back months later.  I know.....because that happened to me.  I would think that something was going on, but then not have any TIA's for months. 

Let me know if I can be of assistance or help in any way.  You and your daughter will be in my prayers. 

Michelle

Tracy,

This is not a wait-and-see disease.  My sister, Patty, had a wait-and-see doctor.  We waited and saw the results after a devistating storke which left her blind, on a feeding tube, on briefs, and a quadraplegic.  After she was airlifted to the facility - the doctor actually asked - Why didn't we do the surgery before.  He said this to 4 people. 

If moyamoya.com was here before I would have carried her on my back to a moyamoya specialist. 

Patty does OK now, but has 18 hour a day care.  She can see, weaned off the feeding tube, does OK with bathroom (but we have to use a lift to get her on a shower chair), is still basically a quad.  She has good control of her right hand/arm but  still cannot walk.

I do not want to seem like a downer --I love Patty and will do anything for her but I wonder what her life would be like if she had seen a mm specialit.   Especially having the surgeries before a major stroke.

Janice

I sent Andrea's records to Dr. dauser's office to day so hopefully i will hear something soon.  I was just wondering how many others had to see other specialist. Andrea has seen a hematologist, a genetics doctor, a opthamologist and a retina specialist all for the findings on MRI's.  I now wondering if it is because my neurosurgeon just was trying to get other peoples opinion or if just doesn't know how to treat this.

Tracy

Cool Great News!!!

Keep us updated,  I will keep your family in my prayers.

Rena

I was told by her neurosurgeon that she should have a good eye exam every year, so that her eyes are dialated that way they can take pictures of the blood vessels and keep track of any changes because the vessels in the eyes are very similar to thos in the head and can possible show strokes. there is an article i read on www.newscientist.com/article.ns.id=dn1388  that shows this in older patients.

tracy

I made an appointment for Daphne with her neuroopthamoligist.   I am really curious as to whether her eye issues could be from moyamoya (seems like everything else she's suffered from has a moyamoya tie-in.  Even her heart defect was a narrowing of the aorta - coarctation of the aorta - which I've seen go along with moyamoya in reports).  The last time the neuropthamologist saw her, Daphne had not been diagnosed with Moyamoya, and he thought her eye findings were consistent with CMV (cytomegalovirus), even though they were only prominent in one eye (the right) and she's had no other CMV symptoms. 

Her MRA showed that the opthalmic artery on the opposite side was enlarged??

Daphne also was scheduled for an ERG (to test her retinal function) in January, but that month she ended up having her heart surgery, two strokes and the moyamoya diagnosis, so we never ended up going!