Hi I've been floating around here for a while now, and decided I should probably introduce myself.

My mom has "something like" moyamoya although I'm not sure what makes it only "something like" and not it.  

She first started getting signs that something was wrong over the summer, having something like little spasms in her hand and had trouble controlling it.  She went to the doctor and discovered that she had had a small stroke a while ago, and that these spasms were the results of some focal seisures.

A little while later, she lost complete control over her arm, and it turns out that she had had another stroke.  They found a blockage in her brain (which i think is in a different place than the usual moyamoya cases.. or something like that?) and planned on having an angioplasty and put a stent in to increase blood flow.

She ended up getting a fever a few days before the procedure was supposed to take place, and the fever then caused her to have another stroke which was much bigger-she lost use of both her left arm and left leg.

Soon after, she had the angioplasty done, and everything was good up until Christmas.

She had another stroke, which pushed her physical progress back maybe a few months.  She stayed in the hospital for a week, and they found another blockage just beyond where the stent was located, and since her blood pressure had been low, the smaller new veins that had been growing hadn't received enough blood, causing another small stroke again.

Now, she has an appointment for a bypass consultation on wednesday with someone at Kaiser in LA  who studied under Steinberg (Can't remember his name at the moment.).

Reading this board made me feel a lot better about our situation, but I wanted to ask some questions:
Does this sound like a typical case to you guys or is it something different?  For some reason I just don't trust Kaiser, who I feel like has no experience..  For instance, they told my mom that moyamoya is ONLY found in children, which, after reading this board, I discovered wasn't true.  She is 57, and this has only recently started affecting her.  
After reading some of your praises for Steinberg I really want my mom to see him, but I think money might be an issue.  Do they take common insurance like Blue Cross? Does everyone qualify to see him?  etc.

This is such a scary thing, and I want to let you know how much this board has helped and made me feel a lot better about this.  Thanks!

-Katie

Hi Katie and welcome to this site. So sorry your mom is suffering strokes.

As she has done an angio.....that is a great start place. You can send a copy of that and any other hospital records you feel will be helpful to Dr Steinburg for his expert opinion. It will not cost you anything...he reads these and renders his opinion for free! You can do this thru the mail and they will call you at home with his results.

Now, as they are mentioning (and already placed) stents....that usualy would be a treatment for a different diagnosis...such as a valculitis, arterosclerosis (sp) etc.. proplem, However, it is possible even with the angio they are misdiagnosing her. Best to send her films for additional opinions. You can send them out or hand deliver them to the big medical centers in your area. You should search for a Neurologist with a focus on vascular diseases or a Neuro/vascular surgeon. That will narrow down the field quite a bit.

Do you have a definate diagnosis from the doctors? Have they mentioned things like: severe occlusive disease, or collateral vessels?

Of course, Kaiser is not necessarily the cutting edge in moyamoya as you just found out it's lack of scientific knowledge with the statement "moyamoya is ONLY found in children" which we know is quite incorrect.

She does have something very serious that needs to be addressed. It sure could be MM which would warrent specific treatment. It could also be something of a different nature.....in which I would also reccommend seeking second opinions as it too, should be handled by a top notch surgeon in his field.

In either case, glad to see you are doing your research! Hang in there and hope your mom will be in good health soon. Hopefully, in good hands....she will be like us....in a better place after treatment.

hugs...Diane : )

Hi, Katie.  Thanks for the introduction!

My daughter had surgery with Dr. Steinberg, and we have Blue Cross Blue Shield of Delaware.  They covered just about everything.

I think it would be a great idea to get copies of your mother's imaging studies and medical records related to the surgery and strokes sent to Dr. Steinberg for a second opinion.   He would be able to tell you whether or not he thinks it is moyamoya, and whether he could help.   He will give you his opinion for free.  You don't have to commit to going to him, and you will have his insight.   You can start just by emailing him,  to introduce yourself and get the process started.  He is usually very quick to respond.

If it does turn out to be moyamoya, the angioplasty and stent would not be an effective treatment.

Good luck.  Please keep us posted  on how things go.

Jenny (mom to Daphne www.daphnestory.com)

Katie, I mailed my sons films to Dr. Steinberg, and was happy to here from him, he was the only one that consulted with Roberts Neuroloigist removing having to do/repeating  additional tests he had sta-mca by pass back around halloween(in fact the second was on  halloween) The staff  is great and will help clear up insurance issues with you.

Mike