Hi, I am newly diagnosed with MoyaMoya just this last week.  So far I have been dealing with the Mayo Clinic.  Does anyone have any opinion of them for care and also for surgery?   I return the 3rd week in August for a brain perfussion scan and to talk to the surgeon.  What do I ask him?  Help me please :)

Hi Betsy,

My sister was being treated for mm at mayo Clinic.  She had the surgeries about one year ago.  I believe Dr. Meyers did the surgery.  

Janice

Hi Bethsy,

I am also located in Michigan - 30 miles north of Detroit.  

If you are interested in talking directly, send me an email with phone numbers.

Janice  

H there & welcome!

The #1 question I would ask the surgeon is how many MoyaMoya people he/she has personally cared for.  I contacted Mayo in Minnesota when I was first diagnosed two years ago.  Things may have changed, in fact I'm sure they have, but 2 years ago I was not satisfied with how much experience the neurosurgeons I was referred to there had with MoyaMoya.  In fact, upon my first contact with them, they were searching high and low for a surgeon that had any experience with it or even knew what I was talking about.  

I am by no means trying to discourage you from going to Mayo for this!  They are known to be highly reputable facilities and as you heard Janice's sister was treated for MM there.  For all I know, they may have since had the opportunity to treat hundreds more diagnosed with MM but I do feel that this is an important question to ask of a surgeon.  A surgeon's experience and indepth knowledge of this particular disease is absolutely key.

Try to read all you can on the board in the "Links" section and all the individual stories.  There are great experiences here to learn from.   And, ask away- we were all at the same place you are right now at one time or another!  

Hang in there! ;)
Lisa  

Beth and Lisa,

Beth,

Lisa said it correctly.   I would always have a doctor and hospital  that has experience, indepth knowledge and deals with mm on a daily basis.      

This website is wonderful with all the information on mm. Read all you can and you will make an informed decision.

Beth, please call me if you want to talk about our experince at Mayo.  I am always up early in the morning.  

Janice

:) :D Hi Bethsy...

I saw your post when I got back from Rochester (the Mayo) after Cara's first MM surgery which was July 14th.  We got back July 18th.   Then we went back August 21st for her second surgery on August 23rd and got back this past Friday the 27th.

I am not sure about Lisa H's post...that the Mayo was looking high and low for surgeon with MM experience.  Dr. Fredric Meyer has been there a long time.  He was trained by Dr. Thor Sundt (Chief of Neurosurgery at the Mayo) before he died of brain cancer 12 years ago...Dr. Meyer co-authored a chapter on MoyaMoya in Sundt's book of Occlusive Cerebrovascular Disease.  And Dr. Meyer was just recently made Chief of Neurosurgery.  But anyway the Mayo is HUGE and maybe when Lisa was there whoever she saw wasn't familiar with MM.  

It was a very hectic time during Cara's first surgery and we only got to see Dr. Meyer before the surgery, after the surgery and then the next day...but his resident, Dr. Utter came each morning and evening to check on Cara.
But the second surgery..we saw alot of Dr. Meyer and on the last day Dr. Meyer asked if Cara and I could talk to two parents of a 15 yr old boy that had a stroke...possible MM patient but not for sure....we went down to the "teen" floor and waited until after Dr. Meyer talked with them....but they were too emotional after their talk with him that we didn't get the chance.  I did have a print up of MoyaMoya.com and gave it to the nurse to give to the parents.

Our experience at the Mayo was wonderful !  Feel free to ask any questions.   We plan on going back there for followup angiograms rather than having it done in Phx.

Tight hugs,  CarasMOM