I am not a new member of the message board, however I have not really posted much on the board until now. I was initially diagnosed with Moyamoya in March of this year, after visiting a neurologist. I was then refered to a neurosurgeon in Atlanta in April. I then decided to sent my scans to Dr. Steinberg at Stanford University last week. I received a call from Dr. Steinberg's assistant, Teresa and informed me of the status of my situation. I have been referred for further testing and evaluation for surgery. I have been doing research but when in reality, I am kind of nervous about all of this. I am now trying to figure out what questions to ask for my visit. Also, I am concerned about recovery time after surgery; about how long the recovery time period will last after surgery and approximately what time you would normally return to work? What are some of your experiences and what are some suggestions that anyone has had. If anyone can assist me in this process, it would be greatly appreciated.

Hi! I just read that you were referred to a surgeon in the Atlanta area. If you don't mind me asking, who were you referred to? I am getting my surgery done next week at Emory University Hospital and I live in Alpharetta, GA.

I visited Dr. Barrow at Emory University.

Maggi,

Welcome to MM.com and the moyamoya family.  Sorry that you have Moyamoya but you are not alone.  You will get a lot of tremendous information from this site from a variety of people with a variety of experiences.  Just remember that no 2 cases of MM are alike.  I was diagnosed with MM in March of 2009 and traveled to Stanford from Illinois in April 2009 for surgery.  I had my first surgery on April 8th and the second one week later on April 15th.  I then stayed in California for another 2 weeks before traveling back home.  I was able to return to work on June 1st.  Most people are able to return to work within 3-6 weeks after surgery, sometimes it takes  up to 8 weeks.  There are several factors that will determine how long your recovery is.  First it will depend on what type of surgery you have, direct or indirect bypass.  Then it will depend on your over all health and age, as with any surgery.  Those that have had several strokes and have deficits from them usually take longer to recover that those who have never had a stroke or do not have any permanent damage from strokes.  I have had 3 strokes prior to surgery with no significant deficits.  I did however develop an infection after surgery, so that slowed my recovery done somewhat. 
Dr. Steinberg and his team are absolutely wonderful.  I do not have anything negative to say about my experience at Stanford.  It is a wonderful hospital that provides excellent care to its patients.  you will be in great hands.  Plan on spending 3 - 5 days in the hospital after surgery and if you have to have more than one surgery ( one on each side ) then plan on a week between surgeries.  I went into the hospital for surgery #1 on a Wed, was discharged to the hotel on Sunday and returned that following Wed for surgery #2.  I was then discharged back to the hotel with my husband on Friday.  I was able to get out a little that weekend after the second surgery but not much.  The worst part of the recovery for me was the horrible fatigue.  Most everyone that I have encountered has had some degree of fatigue after surgery, some more than others.  Just remember to take it easy, get lots of rest, and stay hydrated: both before and after surgery. 
There are several places to stay while you are there but my husband and I stay at the CreekSide Inn on El Camino Reale drive just a few minutes from the hospital.  If you call the hotel and ask for Lindo ( front desk manager) and explain that you are there for surgery at the hospital they will give you a reasonable rate.  They have been wonderful to my husband and I every time we have been there. 
Dr. Steinberg usually wants to see his patients back  6 months after surgery for an angiogram and scans and then again at one year. 
Most people have some swelling of their face and around the eye after surgery.  Mine was so bad after my first surgery that my eye swelled shut and I had a black eye.  Don't let this alarm you, it is normal.  If you wear glasses things can be difficult after surgery with the swelling, but just ask Teresa, Dr. Steinberg's nurse and she will give you more information is this pertains to you.  Usually you will spend the first night after surgery in the ICU, so don't worry if that happens.  It is to be expected.  Some people may need a couple nights in the ICU. 
I hope this helps to answer some of your questions.  Just remember you are not alone, you have a huge family right here on MM.com.  It is nice to hear about all the different experiences that people have had. 
Good Luck and please keep us posted.  Feel free to e-mail me if you have any other questions.  You will be in my prayers.

God Bless,
Tracie

Hi Maggi -

Tracie is absolutely right, no two moyamoya cases are alike.  My story - I was diagnosed in 2003, when I was 28 after a stroke.  I had my surgeries (Dr. Scott in Boston - indirect bypass) December 2003 and a week later in January 2004.  I had another stroke after my second surgery.  I was out of work for 5 weeks and went back part time while the other time was spent in occupational and speech therapy.   I have to say, though.  In my case, going back to work helped me regain my speech as I was forced to speak with people - otherwise I was sitting at home alone during the day!

Agreed - fatigue is a tough one on the road to recovery.  But, that can be said about any major surgery.  So, bottom line, you will have major surgery!  Give your body as much time as needed to heal. 

You have found a great resource in moyamoya.com.  Both the board, and the people who make up this tremendous family!  Please ask any questions, no matter how small you think they may be! 

-Shari

Thank you so very much for the information and experiences that you have shared. It really makes it easier for me to be able to prepare. I just recieved a letter from Stanford regarding Dr. Steinberg's recommendations. 


Nina