my husband was diagnosed on Nov 24th.  We are heading across the country to see dr steinberg for surgery on the 21st of Jan.  what will recovery be like and when can john go back to work.  He is an engineer with a desk job!  Thanks, Lily

ps glad this forum is here

Well I pray his surgery goes great. its hard to say what his recovery will be like, cause i think its different for everyone, Mine was pretty easy some days others it was hard, My case is so different though, Just encourage him all the time during the recovery period which can take a long time in some cases. Some people can go back to work I think My friend went back to work 8 weeks after, it just all depends, again, we all are so different, I pray that his recovery will be quick and go good, keep us posted and updated

I took one month off of work, and I an an engineer with a desk job. I couldn't concentrate on the computer for long peroids of time right after the surgery. When I went backt to work it was full time and it took me about two weeks to reajust to the work lights and noises. Lights was a migraine trigger untill a year after my surgery. Just have him tell his work that if he needs to go home let him or if he needs a rest let him. My work was very understandable. everyone heals diffrent so just let him know to be honest with him self and if he needs to take a break then do so. I pushed myself to hard one day and did a bunch of cleaning, I felt like I went to an all night drinking party the next day.  

I hope his surgery goes well.  I will pray for a speedy recovery.
Becky

I was just diagnosed on Dec 12. My husband and I are going to see Dr. Steinberg too. My surgery date is scheduled for Jan 20.

This forum is great...we've gotten a lot of good info from the postings.

:)

Wow we will probably see you at Stanford. Hope all goes well with your surgery as well.  Prayers to all

Lily

Hi!  I am taking my daughter to Stanford on Jan.21st.  She doesn't have any appointments until the 22nd though.  Contact me if anyone wants to meet or needs someone to talk to!!!  Emily is having her six month check up and will be having her MRI's and Spect scans and and angiogram to confirm that everything is going just wonderfully. ;)

I had my first surgery on  november 5th and had 2 strokes in the hospital at Stanford. one was during my first surgery. It affected my left side.I can barely use my left hand, I left Stanford and went straight to rehab for rehab on my left hand, it was hell, I wanted to leave so bad, I had to have a pass from the dr to leave on x-mas eve and x-mas day for my family get together.I have had problems with blood pressure and sezures
Amy

Hi Amy,
Welcome back! It was wonderful to hear that you made it home for the holidays. Sounds like you have a lot of hard work ahead of you yet. Please know that you've got your whole Moyamoya family rooting for you! Hope you'll keep us posted on your progress and don't hesitate to post when you find yourself needing some moral support or you just want to gripe - you're entitled. There are absolutely amazing stories of people who have recovered completely from their stroke. It takes time, patience and a heck of a lot of work, but it does get better.
Best wishes,
Kim

This board is amazing. My finance was diagnosed with Moya Moya and we are in Los Angeles trying to get a referral to Dr. Steinberg ASAP. 7 years ago UCLA told us he was fine and his moyamoya was "nothing to worry about" he just had a seizure or a stroke - doctors are not sure which. We are getting married July 13, 2009 right around the corner. For me this is a nightmare, but I know for him it is worse. Can anyone tell me what the time frame is from diagnosis to surgery?

Also, for any of you with moyamoya what is the best way I can be there for him? He does not want to talk about it. He does not even want to research anything about the disease. I am trying to get as much information so we can make the best decision for his life.

Thank you,

Alia

Hi Alia,   Welcome to the mm family. The time frame from diagnosis to surgery vary. I was diagnosed in 2002 and had indirect by-pass surgery in 2003. It took a year because I had to have two aneurysms coiled first and they wanted to let my brain rest and heal. Don't push him to talk about it. This diagnosis is alot to take in. Just be there for him. Do not stop your research about mm. When he is ready to learn about this disease you will have the answers.  

You are both in my prayers,  Sharon

Hey Alia

Yes, this forum is quite special and I welcome you. Your fiance is obviously in denial about the seriousness of what he's got. You are doing the right thing by researching the subject on his behalf because he cannot deny what he's got forever, and when he's ready to talk about it, you will have all the answers.

I think the time frame from Dr Steinberg seeing the images to surgery will vary depending on many factors; the main one being risk of a stroke. The moyamoya specialist doctors, like Dr Steinberg, don't mess around if they believe there is a risk.

It is indeed very close to your wedding date. You really don't want to put your fiance under any unneccessary pressure soon after brain surgery. Rest is the best medicine. This is something you will have to assess.

Good luck and stay strong
Mark (Luca's Dad)

Thank you Mark! I am hoping we can see Dr. Steinberg within the next few weeks. I look forward to using this board as a support system and a resource thanks for your insight!

Hi again everyone!  So, my husband has successfully made it through his direct bypass surgery with the help of the wonderful Dr. Stienberg.  We are currently at Stanford awaiting our final post-op appointment before we go home. YAY!  His recovering as been considered exceptional and his pain level has been less than the pain he experienced after his shoulder surgery (surfing accident).  Take a look at our blog for an idea of the day-to-day recovery - it was NOT as scary as I thought it was going be!  Blog:  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or God bless Stanford!

Hi Alia, I am so relieved to read your post.  I was diagnosed with MM in Dec. 08  and will be having surgery in two weeks.  I am a single parent of a 9 year old daughter and go through my brave then terrified moments.  Lately I've been obsessed with finding out about every detail of the surgery and looking at pictures so I'll know what to expect and be prepared so seeing your blog and pictures of your husband doing well calmed me a bit.  I'm so glad to hear that your husbands doing well.  Sometimes the message boards can be a little scary since there are posts of complications and other problems that can arise after surgery.  I have really good feelings about the surgery and I think that's important.  Well, I just wanted to thank you for sharing and that it made a world of difference for me and made it a little less scary.  BTW, congrats on your wedding, now you can really start your lives!  Suni

Hi Alia,

I'm so glad to hear your fiance made it through his surgery.  Congratulations on your wedding!  To answer some of the topics on this thread, I was diagnosed in late August 2008, and had surgery scheduled in mid-October for right before Christmas 2008.  The only reason I think I put it off was because my first surgeon made me wait a month, said to just wait it out for 6 more months, and to follow up again, because my blood flow was still adequate.  But we got a second opinion from Dr. Scott in Boston, and he recommended surgery (I was a Suzuki level 3).  It really depends on your health insurance, and who you end up contacting.  Dr. Scott and Dr. Steinberg are great about responding right away if you sent them your records / results. 

I also have a desk job, but was able to return 6 weeks after surgery.  Initially, it was hard to focus on the computer for very long, but by the time I went back I had no problem.  Reading books was also an issue.  But I'm happy to say that the problem went away, and I've been working happily (?, ha) since February with no problems. 

The hair's been growing back fast, so if you're worried about that, the scars should be covered if your husband keeps slightly longer hair and not a buzz cut.  For me, I adopted shorter hair just so it could all grow out even.

In terms of not wanting to know about the disease, there were times I felt the same way.  At times my husband was more interested in finding out as much as he could compared to me.  When I read some people's posts here, it was scary, especially right before surgery, but it's true everyone's situation is different, and if the MM was caught early enough, and there haven't been any strokes / damage, there's less of a chance of difficulties with the operation.  It's really up to the person involved, though.  Sometimes I didn't want to hear it; other times I was glad to know what was coming.

One of my worst problems was just dealing with so much anesthesia, my stomach was awful, and not being able to open my jaw very far to eat was bad, and just the pressure from not being able to stretch it out was an issue.  But you work on it little by little, and when it stretches out, the pressure goes away, and you feel way better. 

I had a 6-month checkup which went fine, and go for my first post-op angiogram mid-December.  If I didn't tell people, they wouldn't even know I had this huge event in my life...so all in all, I'd have to say everything went well.  I hope it's the same for all of you!!  Good luck!

Judy

Just curious on recovery time for my 12 year old who will be having surgery on November 24, on recovery time , any input would be greatly appreciated!!! He is supposed to go on a school trip from here in Toronto , Ontario to Montreal for 3 days via a coach bus , what do you all think ?? Will it be too much for hiim?? Thanks

i guess i should of read  my post a little better !! His trip is the beginning of April

lillyandjohn:joshand mom:i'' can only relate my experience.I had my stroke nov24th2009.thats when I recieved my MM diagnosis,I went thru rehab for my stoke.I then had my surgery Feb 2 2010.One night in ICU for observation and one day of mri's and stuff to make sure everything was working right.I was discharged Feb 4th 2010.The surgery was pretty painless.John and josh are gonna do fine and be up and around in no time.The Doctors "got this"down to an art.I know it sounds scarry but stay strong and know were all praying for you guys. ;D