I have a very blocked Middle cerebral artery segment that they have said is Moyamoya.  I've been on plavix and crestor for 1yr (they didn't know/realize it was moyamoya til recently) and have no symptoms at the moment.  
However, the blockage is progressively getting worse.  An arteriogram in Feb 2008 was around 70 percent or so blocked, and one in August showed to be 80 to 90 percent.  
They cannot balloon angioplasty the blockage or stent it, and it probably wouldn't work anyway, so they have referred me to a surgeon for an EC-IC bypass.  I'm scheduled to meet with them on Monday 1/19, and the surgery is 1/20 if all goes well.  
I have to work on this schedule as my job may play out in the next few months and we have to travel approx 8hrs to see this surgeon.

What do I need to know in advance about this procedure?
They've told me to expect to be off work 4wks and that I should be able to leave the hospital on the 24th or 25th.
Can you fly a few weeks after the surgery?  I have to see the doctor 3weeks afterwards.

Once everything heals, can you resume normal activities?  My current physician will not allow me to play most sports (mainly ice hockey) due to the bleeding risk with plavix.

I'm sure I'll have more questions, but I'll post them when I remember them.....

Hi Richard and welcome to the moyamoya family!

My brother flew home from Stanford (2,500 miles) approximately 2 weeks after his second surgery. So it is safe to fly.

As for returning to work, that is very individual depending on the person's current medical state and surgery outcome. It sounds like you have caught this progressive disease early before any major event like a stroke. For that reason, you may do very well and be able to return to work sooner than someone who has had a major event. Again, it is very individualized.

As for resuming to regular activity, again it depends on a number of factors and what you define as normal activity. Dr. Steinberg at Stanford prohibits any skydiving, as an example, for anyone simply due to the neurological effects of the quick  and abrupt jerking that takes place when skydiving. One of our family members, Tara, is a swimmer. Dr. Steinberg suggested she wear a wetsuit which makes sense as she swims competition in places like the San Francisco Bay.

Other MMers will most likely share their stories and their doctor's recommendations regarding return to work and activites restrictions.

Again, welcome to the family and best wishes for a smooth surgery and a quick recovery.

Please keep us posted on your progress.

Lore

Hi Richard,  we are pretty new to MMD as well.  Like you my daughter did not have a stroke or anything major before her surgery.  She had her surgery on Dec. 22 and is already back at school full time and doing quite well.  I think she has been the exception rather than the rule.  Her doctor also said she'd need 4 weeks but so far has been just fine...by the way...she is 14, so that may be a factor.  She does competetive jumping with her horse and she has been told she can go back to it as soon as she can safely wear a helmet.  Equestrian helmets tend to fit snugly aroung the area of the surgery so we need to make sure she is healed first.  As for the surgery part she felt terrible the second and third day.  The first day she was still pretty drugged up.  Fourth day we went home.  We drove so can't offer anything on the flying.  One thing that startled us in ICU was how quickly her face and eyed swelled up.  It happened so fast we were just sure there was a problem...it was normal but scary.
Let us know how you did when you get home.

Donna

Hi Richard, [smiley=wave.gif] Welcome to our MM family!

The first thing in advance of the procedure that I’d want to know is how much MM experience my neurosurgeon had. There is a great deal of factors involved with this rare disease and sadly there’s a huge lack of knowledge and understanding about MM throughout most of the medical profession, so I would want to be sure my doctor understood the disease and had success in treating it.

Every MM case is different because of each patient’s individual factors, so it wouldn’t be accurate to assume your surgical experience would be the same as another’s. I’ve heard some say they’ve had dental work that was far worse than their MM surgery, and yet another may have struggled, so it seems to be different for each patient, depending on their personal specifics, their doctor, the degree of blockage, etc. I was amazed that DJ was sitting up in ICU putting this website online after his surgery, so you see it’s different for everyone. You may be up and around in no time or a bit longer than some.

That’s not to say you shouldn’t ask questions, you should always ask plenty of questions. No question is too small. The more you know about this disease the less frightened you’ll be knowing that it is successfully treatable if you go the proper route for your particular case with a MM experienced surgeon.

Everyone I know who’s had successful treatment were able to resume normal everyday type activities bases on their own capabilities, but some other activities, such as driving, sports, etc, I would think only your doctor would be able to answer that for you. Like Lore said, it would depend on your medical condition and your surgical outcome, and only he would know those specifics.

There are so many good people here who have traveled the road you and your family are on, so please feel free to ask anything and gather all the info you can. We’re all here to help and support you in any way we can.

Please know you’ll be in my thoughts and prayers.

Please keep us posted.

Mar

We met with the doctor today.  He said that I would be having a bypass, but that I do not have moyamoya?
He couldn't really point to a specific cause, but said it was likely that elevated LDL and a turbulent flow area may have caused the area, but it was just bad luck.  

As for follow up on the activities post-procedure, he told me I will likely be on plavix long-term, and no contact sports.  Period.  And nothing that could compress the area where the artery will enter the skull either, even tight glasses or a tight baseball cap, hardhat, or the like.  
Having the procedure in the morning at 11am or so EST.  

I said a prayer for you!
God Bless You!
Michele

Well I had my bypass.  The first try didn't work, he had to do it again.  I'm afraid in the hands of a lesser surgeon, I wouldn't have made it.  
The surgery was tuesday and I am now out of the hospital.  The only thing I'm really running into is the pain.......I've never broken a bone so I've never really dealt with this sort of pain before, but I do feel better in that they have corrected the problem.

Thanks so much for all of your support.