My son Nathan (10) had surgery on both sides in March. Dr. said everything looked good, now we wait 12-18 months for healing. 2 weeks ago my son had another stroke (now makes 3) followed by what Dr.  thinks are seizures. EEG done yesterday. I have many questions but I can't seem to think. I thought the strokes were to much now my son has something else to deal with and try to manage. He jurks alot. His head, arms, and legs (like spasems). It always effects the stroke side (right side). His Dr. was wonderful at performing the surgery but now he doesn't have much knowledge about now. What happens now? He said after the MRI yesterday everything looked great. He also said if Nathan is having seizures the medicine they usually give for them is not good for MM. If not seizures then what? I know I have to wait to get the results, but I wonder what else? We live in a town with 6 hospitals and not one person with knowledge of MM. His PCP doesn't want to even see him because of his lack of knowledge about
MM. We spend alot of time going to Gainesville. I just thought he had been through the worst part. I hate to send him back to school because of the jurking. It's hard for him to even spell his name. What else is there and how much more is going to happen to my son. He was regaining his strength lost from the first stroke now it seems were back at the begining. Will the surgery stop the strokes after the healing time is up? Does anyone know about the jurking? I try to be smarter about this but when drs don't know, how will I?

Please help and thanks for listening

Saundra

Hi Shaundra,

Sorry to hear about your son having more problems and the lack of MM knowledge in your medical community.

You are correct.  If Nathan had an in-direct type surgery, it could take up to a year (or more) for the surgery to take the full effect.

It sounds like Nathan is still having TIA's (or mini strokes).  With most of us who've had surgery, occasional TIA's seem to be fairly normal.  However, if he is having them all the time, someone needs to look into it.

Obviously, I'm not a doctor, but I would suggest you push for them to do another angiogram to see if the surgeries are working.  You'd think there would be some improvement after 6 months?

If you can't get answers from the medical community in FL, I would suggest maybe getting ahold of a specialist such as Dr. Scott in Boston for another opinion.

Don't know if this info helps, but hopefully it can get you pointed in the right direction.  Please don't hesitate posting questions on here for us.  As patients and supporters, we have a lot of experience dealing with Moyamoya!

Hope to hear back from you soon,

-DJ

Hi Saundra,

I'm sorry to hear that Nathan is having difficulties. Please know we are all here to support you. 

DJ gave you very good insight and advice and summed it up. 

I want to share with you that my brother Kevin lived in Florida at the time of his stroke.  Although he was 43 at the time, he too had difficulty getting diagnosed properly and getting treatment due to the lack of knowledge about moyamoya.  In fact he was originally diagnosed with FMD.  I contacted Shands and they turned him down.  Again, it is the lack of knowledge in the medical community.  I brought Kevin to Ohio to live with me and continued to have difficulty getting Kevin treated and properly diagnosed due to the lack of knowledge of moyamoya in Ohio so I do know what you are going through and how frustrating it is.  DJ suggested getting a second opinion from a moyamoya specialist like Dr. Scott in Boston.  I have to agree that it is so very important not to leave any stone unturned.  Through moyamoya.com I found Dr. Steinberg at Stanford who like Dr. Scott, is a moyamoya specialist. I can't begin to describe how elated and relieved I was after talking with a moyamoya specialist.  It was a God send.  As a result, Kevin had back to back direct bypasses in May and is doing very well. However, it appears Nathan had different bypasses. There are direct and indirect bypasses. The indirect bypasses take longer.  Kevin also had tremors and seizures.  It wasn't until after his surgery that his tremors subsided. He continues to take anti seizure meds which many other moyamoya patients take as well. He hasn't had a seizure since surgery.

Before Kevin was diagnosed with moyamoya he wasn't being treated properly with the correct meds. I still run into doctors that are totally unaware of moyamoya.  I carry a copy of the moyamoya.com site and hand it to doctors and suggest they go to their computer and click on the video and the links to Stanford.  I'm not suggesting you do that in place of a second opinion by a moyamoya specialist. But at least, it has raised awareness and has helped in getting doctors to call someone who is knowledgeable. I'm not a doctor but I I would definately seek a second opinion from a moyamoya specialist.

Please keep us posted on Nathan's test results and progress.

Hugs,

Lore

Mandy is also taking 2 different anti seizure meds Carbatrol and Neurotin she has taken like Cara trileptal in the past. Absolutely get a second opinion, like stated you can mail studies for they're opinion. Just don't give up keep plugging at it. We have just moved to Ga. and finding a Neurologist that knows of MM is impossible . I am taking Mandy to Emory Hospital where Dr. Barrow the Neurosurgeon is,  people on this site have had good experiences with him and they said if they're are any questions they will ask him...thats as close as I'm gonna get, its an hour drive but hey you do what you gotta do, I feel better knowing at least someone there knows about MM, they say they will discuss her case with him. I spent tons of time on phone calls it was really really frustrating just keep at it, it will work out...don't give up. 
                        Nancy

Hi Saundra,

A belated welcome to our MM family!  I'm sorry to hear that your son is having difficulties, but am very glad you found your way to us!

It is an easy assumption to make that a neurosurgeon is knowledgeable about a specific disease or condition they've surgically treated.  Unfortunately, that is not usually the case with MM.  I agree with the recommendation made by others that you get Nathan to a MM specialist - one who deals with it on a daily basis.  Dr. Scott would be an excellent resource, as he is the premier expert on the east coast.  I've listed his link, which includes his phone # and email address below.  You should be able to communicate with him, at least initially, via email and/or phone, without having to go to Boston.

http://www.boston-neurosurg.org/faculty/scott.html

Good luck . . . I hope Nathan is feeling better . . . you will both be added to my prayers.

Hugs from California,
Jill