Hello, Some of you know me, my name is Jenny, 18 yrs old. I had the indirect procedure done on Oct. 9, 2009. Was doing okay, in and out of rehab relearning speech and motor functions. But other than that my severe dizziness was not as often. My memory is failing me again. I have been repeating words and ideas within minutes of each other not realizing it, and when I read i get mixed up; Playing cards thinking I had a queen instead of a jack when looking directly at them. They are now talking about another surgery, it is most likely they will be doing another one, and they have a different method. It is not the standard direct or indirect, they cut along many major arteries around my brain redirecting as such, instead of one. They have only done this a couple of times on Moyamoya patients with great success, but still... Only a couple of Moyamoya patients. I like the idea that if this plan fails I have Direct to fall back on, if I go straight to direct and it does not work there is nothing more they can do. I am starting college in January. I feel like I'm losing my mind some days, forgetting so much, repeating so much, or not seeing right. This is a new technique what are your views on using it or any comforting thoughts? I thank all that reply, and cannot wait to hear your response's.

Jenny, I am so sorry to hear you have to have surgery again.  Is it on the same side?  I have not heard of this procedure. Who is doing it?  I will let Destin know.  when will you have more answers?  Please keep us posted.  Sending a big hug your way.
Donna

It is on the same side, my left. My right side is still unaffected by the Moyamoya. Dr. Iskandar from UW- Madison hospital will be doing it. They said that they would understand if I choose to have someone else do it, but my insurance only covers so many doctors and all in my area. I don't know much, I had a cerebral angiogram a week and a half ago and they said they would have to get back to me to make an appointment. Instead of having one doctor I have three that work as one, so they have to find time in all threes schedule at the same time. They said they would call within a week or two so I am still waiting. Hopefully soon I will know more.

Jenny,
I am sorry to hear your are still having some issues. I have unilaterial MM and my surgery was done at the Mayo Clinic in MN. Dr. Fredric Meyer did my STA-MCA bypass and encephalomyosynangios (EMS). 

Contact Info: Secretary 507-284-5317
                     Nurse       507-284-2820
                     His Voice mail 507-284-2511
                     Fax           507-284-5206

Dr. Meyer's Office Address
200 First street SW
Rochester, Minnesota 55905

I am still in collage too so I understand the issues you might be experencing. I am finishing my BS in Electrical Engineering, and I work full time as an engineering aid. Stay strong.
I hope this helped.
Becky

Good luck Jenny.  I am having my first surgery for MM on December 16th in Boston.  Dr.Rose Du who worked with Dr. Steinberg is doing the surgery.  I will keep you in my thoughts and prayers.  Stay strong!

Jmac

Good luck Jenny.  I am having my first surgery for MM on December 16th in Boston.  Dr.Rose Du who worked with Dr. Steinberg is doing the surgery.  I will keep you in my thoughts and prayers.  Stay strong!

Jmac

Hi Jenny,

Sorry to hear about that.  I know it's really frustrating.  I have unilateral MM on my left side.  I experienced a lot of the same problems you mentioned but it does get better.  I had 5 strokes and my operation in 2005.  I never got dizzy but at least two years post op, i had speech problems, mixed things up (like your card example), and could not remember things to save my life.  All of this was happening and I was starting a new high-level job.  I couldn't understand dates for a long time which is hard because my husband was a touring musician who kept telling me dates I didn't understand and couldn't remember.  For me it got better.  I don't really have any symptoms left other than some word finding or stuttering but it's very rare. 

The new surgery you mentioned sounds scary but I guess all brain surgery is scary.  If it was me, I would send your scans to Dr. Steinberg at Stanford.  He will look at your scans for free and give you his opinion.  If he will do the surgery, keep fighting with your insurance to release you to a specialist.  insist that this is a very rare disease with only a limited number of doctors that have experience. 

Best of luck to you! 
Monica

Thank you everyone for writing. Monica: I have Dr. Steinberg informed, and I would like him to do my surgery but my Insurance will not payfor it, and where I go it is fully covered. I have a set date, January 20th will be my surgery date. It would have been next week, but my doctor is going on vacation so he doesnt feel comfortable leaving me alone right after surgery. They keep saying my symptoms are not classic Moyamoya symptoms, and that the surgery might not even help because of that. But how can symptoms of Moyamoya be classic? Its a very unpredictable disease. lol. Thank you all for the support. :)

JMAC: Good luck on your surgery, hope all goes well.

Hey Jenny! Did you ever get Dr. Stienbergs opinion? Just wondering what he thought. So sorry you have to do this again. Miss you!!!!Keep us posted!!