i have been diagnosed with mm.  i am having surgery in two days and it has all happened soooooo fast.  i am having a right side bypass.  within two weeks my life has turned completely upside down.  i have so many questions but have not been able to ask them.  i am a marathon runner and was suppose to run one this november.  will i be able to run again?  will i be able to even be in the sun for long periods of time?  is there anything that i should know about about the recovery that the doctors dont tell you?  and will i have to shave my head  ?!!  if anyone can answer any of these questions i would appreciate it so much!  thanks

Lisa:

I can try to answer your questions regarding exercise... I was diagnosed with moyamoya as a child, and am now an adult. I was very active in many sports, especially soccer... which is a lot of running! I would think your doctor should be fine with you exercising, as long as you listen to your body and keep very hydrated. I always did fine with "natural" stress  on my body. Like, exercise causes hyperventilation, but it never throws me into a "spell". Only artificall hyperventilations makes my moyamoya a problem. Also, I am not allowed to play some sports where I could get hit in the head really hard (like surfing). In soccer, I guess this could happen, I was just told I shouldn't learn to surf...

And the hair issue... They will shave some, where the incision is, but they will try not to shave half your head unless they have to. But, remember, because it is only being shaved, it will grow fast.

Please let us all help you with any other questions you have. You will be fine.

Take Care

Sara

First, I'd like to say... welcome to our mm family and to let you know we'll all be keeping you in our thoughts and prayers during your surgery. May I ask where that will be and the Neurosurgeons' name? It may help others in the future in finding a surgeon with mm experience.

As far as your questions about running, it's been my observation and experience that it would depend on your individual situation and medical condtion and also what type of surgery you're having. Do you have to have two surgeries (for both sides) and what type of surgery are you having? Cara's mom mentioned it taking 6-12 months for the arteries to grow for adequate blood supply, that's true if you're having the in-direct surgery. (EDAS) The direct surgery (STA-MCA) you receive immediate blood supply. So alot depends before answering your questions correctly for YOU. It's been my experience though, that you can pretty much do what ever you want when you're physician says so from your follow up tests. As Sara mentioned, it's very important that you stay hydrated. We have a few posts where others in our mm family mention their own do's and don'ts from experience, but it's always good to ask your doctor about your individual case. The more you know about mm, the more confident you'll become in making informed decisions, so it's been my rule to read all you can about it.

Take a look at our picture page and you'll see a few in our family that had surgery and how their hair looked the day after the surgery. I think it looked good compared to what must have went through their minds. Not bad at all.

Please keep us posted as soon as you can. You're in our prayers.

God bless,
Mar

hey guys,

i just want to thank you all so much for responding to my questions so quickly.  it is so encouraging to have others know what you are going through.  i plan on talking to my doctor about the running thing after my surgery.  (since most of you agree i need to talk to him...ha ha)  i figure that he will know more after he has done what he needs to do.

to answer two questions asked: my neurosurgeon's name is dr. james rose and he is doing the surgery at methodist hospital in houston texas.  that is where i live and he is suppose to be the best here.  i am having one surgery now on the right side (EST-MCA) and he will let me know when i will be having the second one.    i have not been having symptoms on the left side so he wants to wait a couple of months. 

i went for my pre-op today and everyone was so nice.  it was encouraging.  i have to be there at 9am on thursday so i will keep you guys updated on how it goes.  thanks again so much for your support and prayers.

lisa

Hello,

I sit in the sun for long periods of time.  I am a sun baby.  I love Florida for that one reason.  I have had Moyamoya for over 40 years without surgeries.
What's your concern over the sun?  Is it because of medication?

Hi Lisa!

By now your surgery will be over and I hope and think it went well and you´re feeling better and better every day!
I have a daughter, 8 years old, who had surgery on both sides about 20 months ago so she is a chlid and you´re a grown up but I think some facts goes for all MM-patients no matter age: The most important thing is to keep hydrated, especially while staying in the sun. Louise loves to stay in the sun and of course in the water, swimming and playing,  and as long as she drinks enough it´s perfectly OK, does´nt bother her at all.  In spite of what has been said on this board many times about not wearing tight hats or glasses she always wears a hat in the sun as well as sunglasses. But if she or I forget to keep her well hydrated she gets symthoms like headache, tingling and others. Another "trigger" is tiredness, when she stays up to late or doesn´t get the sleep she needs the same thing happens.
So I believe that as long as you take care of yourself, get enough sleep, stay hydrated and listen to your body you´re going to be able to do just about anything you want. The doctor´s tried to tell me that before my daughters surgery and I was afraid to believe them but now I´m starting to thnk they were right all the time!

I wish you a speedy recovery and many marathons in the future!!


Take care,
Annica