I am just finishing up my time here in California. I had a series of tests and a follow up appointment with Dr. Steinberg. I just wanted to share some information that I received. Some of it many of us already knew but I thought it couldn't hurt to share.

The bloodflow in my head is good. I am 15 months out from surgery. I was having some weakness and numbness in my right side which initiated testing. Everything is good. So now that we established that there is good blood flow there are lifestyle changes I have to focus on to control my Moyamoya symptoms and continue to reduce the risk of stroke. Here goes.

1. Hydrate...Drink...Drink...Drink...
2. No fatigue
3. No stress
4. Low key on the emotional side... (Don't laugh too much and don't cry too much).

I just wanted to share that with you guys.

Reagan

I am soooo happy to hear that everything is good with you Reagan! We have talked about the stress level thing and now we know for sure! Talk to you when you get back into town.
Your Friend,
Kathleen

Hey Reagan

Thanks for the feedback and the reminders. What does Dr Steinberg say about surgery on your other side? Is he happy that the lifestyle changes are sufficient and can help with the numbness and weakness?

Mark (Luca's Dad)

Mark,

My right side is still disease free so it does not need anything but a yearly CT angiogram for follow up on that side. I have to come back in 3 years for a "complete" follow up again. They said the biggest thing they were worried about was blood flow and that was good so now we have to tackle lifestyle changes. So being a single mom of two active kids (ages 4 and 2), working full-time hours plus overtime and going to school full-time, something has to give. I feel like I can finally take a deep breath and relax now that this follow up is over.

Reagan

HEY REAGAN

Just read your post glad you are ok and everything checked out good for you I got home from my surgery on the 21st seems to be going good although i still dont feel normal but my family says its because i have blood flow in my brain again anyway good to hear everything is going good for you!!

Darci

Thank you so much for alerting me.  I need to be remind me all the times.  This is the one we really need to memorize.  Thank you so much for sharing your thoughts.  

Hi Reagan,
It was great meeting you in person at the MM picnic last week. I'm glad to hear that the checkup showed that asll was well. Wow, two small children, a full-time job AND school! No wonder you're tired! I hope you can find a way to balance all your activities. You've got to have your health so take it easy on yourself. Those two darling kids need you and I think you Mom would like to keep you around too. Best wishes always,
Kim

Reagan, I'm a new member just getting to know the site. Thanks for sharing the info. My daughter with MM is 2 years old. I knew about the water, stress, and fatigue but never heard about the laughing and crying to much. My daughter is just starting the terrible twos so I better be careful. If shes not laughing she is crying.  ;D ;D  Danielle

Hey Reagan
It was nice meeting you and your Mom at the picnic.  Thanks for this information, these simple little things are taken for granted and I really needed to read this today.  I am going to put these into practice (more) immediately.  First on the list - STRESS ;-), easiest on the list - WATER!  

Hope all is well
Sandi

Sandi,

I think I'm going to make a few lists and post them in strategic places. I forget all the time. What's the first thing I do...Cry really hard...Get angry and then get stressed to the max. Nothing in the world is worth it. I've been through way too much. Really if you look back at it, we all have...

P.S. It was great to meet you too.


Reagan

Reagan,
You have a “very good point here”.  I posted “Major Bleed One Year After STA-MCA Surgery!”  I failed to mention in my post that Tommy got a ticket on his way to his friend, Rob’s house that Friday before Mother’s Day.  It was a ticket for the window tint that he put on his windows the weekend before.  He knew deep down that he was going to get this ticket because he’s had several in the past for the same reason on other cars.  He just pays them and goes on his way until he gets another.  Crazy, I know but that’s him.  Anyway, he wasn’t angry about the ticket he was angry because the officer slammed a machine on the roof of his new Mustang that reads the tint in the vehicles windows.  He was stressed, angry, yelling and complaining all the way to his friend’s house.  He called everyone in his cell phone during that 3-hour ride and wound up with a massive brain bleed the following morning.

On a happier note!  Tom is doing really well, almost 6-weeks now and he’s moving his right arm and leg, making lots of purposeful movements, following many commands, the swelling is still going down in his brain, and we’re working on getting him to a skilled nursing facility closer to home.  In no time he’ll be ready for Rehab!  Dr Steinberg and his Team think that Tom will walk away from this with some weakness on his left side . . . Bless Dr Steinberg!
Carol