Has anyone lost the side vision? From what I understand it is coming from the muscles. Can poor blood flow going to eyes cause the loss of muscle use and nerve function in the eyes? I am glad that I have found this site!

Do you have tunnel vision, or are you unable to move your eyes to the side?   I've heard of loss of peripheral vision from moyamoya, it is more likely a result of lack of blood flow to the part of the brain that controls vision than to lack of blood flow to the eyes, although either one is possible.   Also, if muscles are affected it probably is still a problem in the brain.  The brain controls everything, including all the muscles of the body.  My daughter, for example, has very low tone all over her body.  There is nothing wrong with any of her muscles, but there is a problem with the brain's communication with those muscles.  People who have strabismus (i.e. one eye crosses in, or one eye turns out) almost always have a neurological issue, rather than an eye issue.

How long have you been diagnosed with moyamoya?  Have you undergone treatment for it? 

Jenny
(mom to Daphne.  Almost 3 years old, diagnosed with moyamoya at 14 months, underwent surgery at 16 months.    www.daphnestory.com)

After my strokes, when I went to my eye doc, I explained my MM diagnosis and that I had had strokes.  For a while, he was giving me field-of-vision tests.  It tests to see if you have any nerve damage in your "field of vision" - he explained to me that this is the test they give all stroke patients.  Anyway, it revealed some nerve damage in one of my eyes, but not enough to worry.  Just my experience...

-Shari

Thanks alot for the support. I found out when I went to Houston for some tests about the vision problem. When I was in the hospital I saw a neurolocist. He was the one that found the problems with the eyes. He asked if I had a neuroligst in Arkansas which I do. He asked how long it would take to get in to see him. I told him three or four months.I was told that it had to be sooner than that. This doctor in Houston has tried to call my doctor in Hot Springs.So far nothing!!!!!!!!!!!! Oh well that is my life!!!!!!!!!!

Very interesting thread.The year before Kathleen's diagnosis I noticed that one of her eyes turned inward towards her nose.She was given glasses for a while and it seemed to help.After ehr surgery and strokes she had a left side neglect wouldn't even look to the left we had to kind of retrain her.After a year or so she was quite a bit better.Then we noticed that one eye would not converge(wouldn't turn in toward ehr nose if you put your finger in her nose).The eye Doc didn't think this was a problem.Now I'm noticing that her eyes don't always work "together".she's due for another eye appt.and I"ll talk with ehr about it.She did mention at her last visit that when looking into her eyes after dialation they apear to be helathy and no nerve damage.It's hard to test her because her verbal skill aren't that of a typical 9 yr old.
Mary and Kathleen

I think if I had known I had MM it would made my eye doctors observations and explanations very different.

Mary Grace,

Kathleen's eyes may be perfectly normal, but the part of the brain that controls her eyes might not be working perfectly.   If you want a doctor's opinion, you could consider seeing a neuroopthamologist (a specialist who knows about neurology and opthamology).  They aren't easy to find, though, I think there are only a handful of them across the country.   I can't remember where you live, but I know there is one at John's Hopkins, and also one at Children's Hospital of Philadelphia.

Strabismus (eyes not working together) is extremely common in children who've had any type of brain injury and can easily cause mistakes in writing, and also other types of clumsiness.  It can affect depth perception, which can make simple things like walking up steps or buttoning a shirt, a lot more challenging. 

Surgery is available for strabismus, but is not always effective, since the problem is in the brain, not the muscles that control the eyes.  There are also exercises out there, but also controversial.  Daphne is on an intensive program for her neurodevelopment, though the Institutes for the Achievement of Human Potential (www.iahp.org), and they have their own ideas about helping strabismus.  They make sense to me, but are even more controversial, probably than the surgery or the exercises

Jenny

I had a major stroke in July of 2002. I lost peripheral vision on the right side. It is hard to deal with but I have learned to compensate. I had two small strokes before that. I was sent to Iowa City hospitals and that is when they did an angiogram and diagnost me and fould I had mm. I had by-pass surgery in June of 2003. Have been stroke free for almost a year. You have to live one day at a time and that is good for me.

Jenny,
I am very interested in why the IAHP program is so controversial.  So fascinating!

I am so sorry for those of you who are having trouble with your eyes or have lost your peripheral vision.  Many well wishes.
Steph