hi I just got diagnosed with mm on Wednesday and have an appointment on Thursday at the Mayo Clinic. I am seeing two different doctors a cerebral neuro specialist and a neuro surgeon to discuss surgery. I had no idea what mm was before this but was having a lot of the symptoms and didn't even know it. I'm just wondering if anybody can tell me how long the hospital stay is? I know you have to do two surgery's from what I've been reading that's what people have said. I was just kind of wondering if anybody could give me any insight on this since I'm 23 and most everybody that has this is older than me. I'm hoping to do my surgery's soon so I don't have to wait long. One more thing Becky you said it took you six months to get into the mayo clinic that's a long time to be waiting. I got in right away the next day so I don't know how it took you six months maybe it was neurologist you were going to at the time. When I said that's where I wanted to go out of the four choices my doctor gave me his called right that day to try to get me in. I am just so thankful that I didn't have to wait long. My doctor didn't even know what moyamoya was he had to research it himself just to explain it to me. I was the one who had to push for all these tests to be done because my doctor didn't want to do them he thought it would be to painful for me. I did it because of all the migraines I've had and how bad they had gotten so it all worked out in the end. I found I have mm and need brain surgery so at least something came out of this.

No it did not take me 6 months to get into the Mayo. I was being miss diagnosed by a STUPID nurologest that knew what MM was but since i was not Asian I could never have MM. She was tourchering me with test to find out what could of caused my stroke since I have these tiny vessels that have poped up arround the area that had the stroke looked so developed. I took the pain and the weakinging of my body but my husband said this is enough. We decided to go to the Mayo for a second opinion. We got an appointment the next day. There I was diagnosed with MM in less then a minuet, and the nurologest there sugested a diffrent nurologest for me to go to for follow ups. The mayo did some tests there and said I needed surgery right away, but since I was on counidan (a nasty blood thinner) I had to wait for my surgery untill all the "poison" coumidan was out of my system.

dramaqueen,
I think you should get a nurologest that knows about MM vs learning about MM. If you are going to the Coon Rapids Nurology clinic across the street from Mercy hospital, I sugest RUNNING AWAY FAST!!!!!!!!!!!!! I now go to the Noran Clinc of nurology which is located across the street from Abott hospital. If you need my nurolgest's info I can give it to you. I have never been happyer!! My current nurologest is the best!! He knows his stuff!

Please keep me posted with how things are going.
Becky

Dr. Fredric Meyer is great at the STA-MCA bypass and encephalomyosynangios (EMS).  He makes sure you ONLY loose the nessasary hair for the surgery. He also talks to like you are human not a hunk of meat to be experimented on.  The nicest group of people I have ever had the pleaser of working with.

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 know some people have had a bad experence working with this clinic. I have exelient insurance. I didn't need a referal and they took care of all the paper work to my insurance company. All I had to do was pay the 2,000.00 bill which I worked out a payment plan with my insuance complany. Things could not have gone smoother. I hope your experence with the Mayo in MN is as smooth as mine and a few others as well.

Becky

Becky
Thank you for telling me about your experience at the mayo clinic. I hope my experience goes just as smoothly as yours did. I can't believe it took six months to find out you had it. Also thanks for telling me about the new neurologist you go to now the one I go to is neurological associates in Mapplwood. That's so funny that you gave me the name to Dr. Fred Meyer he's the surgeon I'm seeing on Thursday at 1:00. I was also going to ask you if you saw for a cerebral neurological specialist Dr. George Petti not sure how he spells it. I'm seeing him first on Thursday at 8:45 but I'll keep you updated on what happens. Oh and thanks again.
Aimee

dramaqueen,
That is awsome you got into see Dr.Meyer. He is great. My mom, my husband and I all wrote down all the questions we could think of so we were prepaired, but he was very thro, and likes to look everyone in the eyes. please keep us posted with how things are going!!

Skay,
I am sorry you had to go throu that. I am shocked the Mayo didn't see you!! You are 100% correct that early detection and surgey is nessacary.

Becky

Hey DQ

Thinking of you today. Let us know how it goes.

Mark

Hi Jesenia
I can't imagine having to go through this all over again you must be terrified. I know I'm terrified and this is only my first surgery. I am having my first of two surgery's on February 20th and I'll go back the next month and do the second one. I am only going to be in the hospital for three days so Friday to Monday but they will have me in ICU over night right after the surgery. I was also told they don't even have to shave my head where doing the surgery. It makes me feel better since I really didn't want to cut my hair short unless it was necessary. I feel so bad for you that you got this when you were 16 and now your 22 to have it come back again must be hard. I want you to know my prayers are with you and I'm thinking of you right now. I hope you get better soon so this doesn't happen again to you oh and by the way the surgeon who's doing my surgery his name is Dr. Fred Meyer. Let me know how your doing and when your surgery is going to be.
Aimee

Becky,
I hope that does not happen with my surgery but I'm afraid it might because he told me the vein and artery are very small. He wants me to come down next Thursday the day before the surgery and have a radiologist see if he can open up the artery a little more. He said if he can't it will be fine it will just make it harder to do the surgery which could make it longer like yours was. The nurse told my mom yesterday when she called and asked about if they have to shave my head at all she said it would be a thin line. I was also told that I would have one day in the critical care unit and than get moved to a regular room. I am getting my haircut tomorrow before I have the surgery which will help. I was supposed to get it after and my mom said it was not a good idea because she was afraid of my beautician messing something up with me just having had the surgery. Now I'm a little scared that you mentioned that I might not grow that little bit of hair back but that's okay. I just want to recover from this and feel much better. Thank you for wishing me a speedy recovery that's what I want as well. I will let you know what happens and how I'm doing once I have the first surgery.
Aimee  

Jesenia I am so glad to be getting done with my surgery it feels like finally I'm getting rid of all the symptoms that came with this. I am so happy to har your surgery is on the 24th right after mine so than your symptoms can go away after this. I can see how your not  scared having been through this before. I can not imagine not being scared or afraid the first time you were going through this. I'm so scared right now and afraid of everything that's happening. I mean I've already had 12 TIA's which is scary to me to think about that happening. I had no idea that was going so that terrifes to think that all this was happening and no one caught it until now. That is the one thing I tell my fanily that I want to get my life back and its going to happen. I can not wait to get on with my life as I'm sure you can't either. Well thank you for keeping me in your paryers I'm doing the same for you. 
aimee

Jesenia...when is your surgery?

I thought I would let everybody surgery went well although there many complication. Aftfer I got out of the hospital an came home speech started slurring and than I got a fever which sent me back to the hospital. I had to be put in the hospital to see what was going on than the sudden seizer in fact I had three of them. Now I had to be on anti seizer medication. I got out of the hospital Saturday after being there since Wednesday night. The surgeon moving second surgery its probably going to be next Monday if he can do it than. He thinks left side really bad that's why moving it up so things don't worse.

Aimee,
I hope all goes well for you with your surgery.  You will be in my thoughts and prayers.

Love,
Audrey

Hey Aimee,
I'll be praying that all goes well for your second surgery. And I too, was put on seizure medications. Something about the brain recovering from a lack of bloodflow that causes it...idk. Hope to hear soon that all went well,
Jesenia