Thanks Mar for that link. I have read many back post I might have missed that. brad had bypass and graft surgery.

I was wondering if anyone as a complete list of dos and dont. Because it seems like some were told somethings and others werent given any restictions. Brad wasnt given any restricitions. They did mention about Cigarette smoke and learning to bend at the knees instead of bending over. He doent always remember that, one time he bent over and then there was this very sharp pain

Ok Some of the dos and donts I didnt know about. They told him when he left the hospital he could wear a hat because it was very cold in boston in Dec. HE doesnt wear a hat all the time now sometimes he will wear a loose baseball cap.  They didnt say anyting about glasses. He wears glasses. He is sensitive to sunlight. He does take an asprin a day. Hes off the dilantin.  

Stress I did know about. Laughing too hard i didnt know about. No One said anything about  swimming. I do know that hes not allowed to do judo any longer.
He has a long way to go for recovery. We take one dy at a time

Lynne  

Lynne-
Out of the restrictions you listed, the only one I was given after my surgery in November was not to wear glasses that press against my temple area.  I actually had a bit of a tough time finding such a pair but I finally did.  I too am on an aspirin a day.  I am able to continue with my physical activities although I am not involved in a contact sport like Judo.  I think we are learning that each doctor is as different as each patient with the restrictions they suggest.
I'm glad to hear your son is taking it one day at a time!  I've finally convinced myself to do that also!!  I wish him improvement each day!
Chelsie

Hi Lynne,
 We are still at Stanford.  The Dr.s told us there are no restrictions after Mark has recovered from the surgeries.  That's the part we need to be defined.  Seems to me that the recovery period is going to take some time.  Marks taking a bit longer than some patients that is frustrating to him.  I'm curious of a couple things you mentioned.  
1 Did Brad have 2 different types of surgery?  Mark had the direct bypass on the right side and the indirect on the left.  Actually the incision is more on the top of his head.
2 You mention that Brad is off Dilantin.  Did he experience any seizures before or after either of the operations and how long has he been on the Dilantin.
 I ask because Mark is experiencing some nombness on his right side that occurs a couple times a day and lasts for10-15 minutes.  He did have 4 seizures after the operations.
                Hope all is well,
                      Ron

Hi, guys!  it's been a while since i've logged in & looked at posts.......my son, Kyle, (8yrs post-stroke/op 4 MM), has been having headaches - has always had them since 4 mo b4 the stroke when he was dx'd.  Usually they are 1st-thing-in-the-morning migraines, but lately and about 6 mo's ago he had run-of-the-mill type headaches for several days.  I chalked it up to sinus pressure (our weather changes/allergy triggers in the air are horrible here in S. Tx),...he wears a baseball cap a lot, but can't wear it to school so I reallly doubt that's the problem.  Neither his neurologist nor neurosurgeon ever gave us any do's/don'ts, although I would never consider allowing him to play football or other similarly brutal sport!  Early on, when I mentioned his headaches, the neurosurgeon just shrugged and said that's typical with MM!  His neurologist has him on cyproheptadine (generic for Periactin which is an antihitamine.  He says it has shown to be effective in treating migraines in young children, but Kyle would still have them from time-to-time.  It's hard to know what to do.  Since he is on aspirin, he can only take acetaminophin for the pain and he claims he gets no relief!   :'( He, too describes the pain as in the front, behind his eyes or in the forehead area.
I would expect vascular expansion from the increased bloodflow right after surgery to cause discomfort, but I don't know how to explain the headaches years after [smiley=huh.gif]!  
Best of luck to you all!

sue

Hi LynnePat,

As far as "Do's and Don't's, I think it’s different for each individual because of the many different factors involved. (Type of surgery, blood pressure, medications, history of TIA’s/strokes, unstable blood flow, (?) etc… the list can go on, it varies with each person, but what’s important is, we share what information we personally experience, and you never know, we may come up with a common similarity of “Do’s and Don’ts” with mm that may help, because unfortunately there isn’t a set of guidelines or a specific list that I’m aware of (other than the very important DO “keep hydrated,” I feel that is vital with every case of mm.) But I do believe it’s important we share information with one another and decide for ourselves what may pertain to us. Also, a mm specialist is more qualified to say from his experience, but again... each individidual case is different.

Brad’s been through a lot, God bless him. It’s good to take one day at a time and give him a chance to recover from all his body has been through. He’s in our continued thoughts and prayers, as is Mark.

Mar

Yes, Mar's right - it is different for each individual.  When I left the hospital after my surgeries the only thing I was told was to keep hydrated.  (When I was diagnosed I was told no Birth Control pills either).  Later, when I went back for my 6 week checkup my doc (Dr. Scott) told me that I should get new glasses because the ones I had were pushing against my head too much (they were actually causing an indentation).  But that's it.  Dr. Scott didn't put me on any food restrictions, etc.  

Now, somethings I've imposed on myself!  I cut down on my caffeine intake - and if I'm eating especially salty food I make sure I drink extra fluids.  Just common sense things like that.

-Shari

Shari,
Interesting you mentioned caffine. I was told no caffine for Tyler. We also make sure he is never around smokers, he always gets a migrain the day after if he is. I am assuming alcohol will also be a problem for him, when he gets of age, since it is known to dehydrate.

Other than that, we did find out that "blowing" causes TIA's for him. When I say blowing I am talking about the blowing exercises in speech therapy, blowing out the candles on his B-day cake, blowing bubbles, and the like.

With no adult vices I figure Tyler might pick up a few choice words to relieve stress  [smiley=JAW_DROP.gif].

Other than  that, Tyler does his normal routine, but he is a passive kid, even if he is an energetic one. His favorite music is Classical and he loves books. His favorite active activity is running, so I can't say much about the more agressive sports and such.

Rena

Rena -

Well, I believe moderation is key!  I used to drink a lot more coffee - I mean - I could drink coffee all day long!  Now, I just have one cup in the morning and that's it....I try to drink caffeine free soda, etc.  

For alcoholic drinks - well, I was never a big drinker.  I'll have a drink once in a while - but I make sure I have a glass of water right next to my apple martini!!!!

-Shari  

Oh, Rena - if only everyone who treats MM patients could read these notes!!  When Kyle was getting ST & OT after his stroke, they had him blowing bubbles & sucking yogurt thru a straw!!  Neither of those were probably a good thing for someone with MM to do (now that my hind sight is so good!).  (Our Dr. didnt give us any "don'ts")  To our knowledge, it never caused a problem with him, but he was only 3 1/2 so he probably couldn't have told us and we might not notice it if it was a TIA.  !#@$  

God's blessings to all....

sue

Hi all,
 I have become compelled to read this board as often as I can to either learn or share as much as I can just like everyone here.  For the people that are on this that have moyamoya I can only say I can't imagine what you have had to endure.  And from a parents perspective I can share with the other parents your hurt.  It's kind of ironic though to see how upset all of us are with the lack of knowledge that there is on this disease.  I know you all, just like my family are extremely nervous of what the future has to hold.  I'm happy that  my son was able to endure all the pain he has to help prolong his life and hopefully live it long and as normal as he can.
 As a group that grows everyday we can help spread the word and help others in the future.  DJ has started something that we have all taken to heart so we must continue to make people aware.  No matter how we do it.  If it's letting someone know about the disease who has a migraine or if you tell a doctor of your experience.  Remember this is rare and the medical field is not aware as they should be.  But for those out there like the Steinbergs, Scotts and Barrows.  Thank you.  Just my view.  But I'm still mad as $#@%^! that my son and the rest of you have to deal with this too.
                                Just my opinion,
                                       Ron

Sue,
Actually you would never been able to miss the "episodes" as the doctors called them. The first one made him lose control of the right side and no speech. The next 3 affected the left side and speech. The last one made the left side limp and the right side jerking but he had speech. It was the scariest one. By what I can tell everyone has different "don't" Tyler seemed to be the first one with the blowing problems that I have heard of, but then again children "blow" more than adults on average.
Rena