Hi everyone,
I have a question regarding flying (commercial airline). My son was diagnosed with moyamoya last October after he suffered a stroke. He had EDAS procedure done on both side in Feb and March of this year. We are planning to go visit our families in Europe next summer and I am a little bit worried about flying. The reason why I am worried is that this summer I took my boy on a gondola ride (we live in the mountains) that goes up to 7700 feet (his dad works in a restaurant at this altitude). When we got to the top of the mountain he started complaining of a headache (he did not have any headaches in a long time prior to that). When we arrive at the top it was really windy and cold and he started running around with his brother and then came right to me and said that there was something wrong with his leg. I was really worried but thankfully he got better. It all happened within a minute. I called the neurologist the next day and he said that he couldn't make anything of what happened and thought that going on high altitude was propably not recommended. Our boy had been on the gondola quite a few times before he got diagnosed and nothing ever happened.
Now I am wondering if I should worry about flying. Our boy has been on many flights before and he was always fine but we didn't know about moyamoya as he was asymptomatic except for occasional headaches. I am wondering if the doctor did not recommend high altitude due to the recent surgeries or is it always going to be the case. I know planes are pressurized but during take off and landing there is always a little bit of pressure.
I guess I would like to hear from other moyamoya sufferers and their experiences with flying and going on high altitude. I will ask the neurosurgeon next time I talk to him but I also know that they don't always have all the answers.
Thank you in advance for any advice you may have.
Take care!
Gazou

Hi Gazou,

My brother Kevin (Cubbie) has MM and was operated on (both sides) in 2005.  He is also a pilot.  We flew back to Ohio from California in an airliner and had no problem.  Also, Kevin has since been flying in a small aircraft at about 10,000 feet.  He had no problem.  However, it can be different for each individual because no two MMers are exactly the same.  

Perhaps there is a difference in being at high altitudes with no pressurization and the fact it was windy and cold. Those conditions may have restricted vessels.  I'm not a clinician that is only my best guess.

Kevin informed me an airliner at 35,000 feet is pressurized at 8,000 feet so he feels if one can fly in a small aircraft at 3,000 to 6,000 feet with no problems they can probably go to 10,000 feet but again, each individual has to know their limits.

Kevin suggests flying at different altitudes and working your way up to see how you personally feel.  It may just be the fact that your son was not only in high altitude but also the conditions at that altitude (cold and windy) that caused the headaches and if he were in an airliner pressurized, minus the weather conditions, he may not experience headaches but again that is simply an assumption.

Perhaps others will share their flying and high altitude experiences with you after MM surgery so you can get a better overall perspective of flying after MM surgery.

Best wishes,

Lore

 

4 months after surgery I got a really bad headache.  6 months after I got a bad headache. A year after it was a bit better.  Good luck

Dear Lore and ladybugz,
Thank you so very much for the information. It has put my worries a little bit to rest.
All the best!
Gazou

Havent flown since my surgery. Befoer my surgery I couln't stand the take off, landing, and any turblence. But since it was the best was to get to where I was going I just beared down and took it. Lots of gum and an antihistimen to keep my sinuses "clear".  good luck!
Becky

My daughter has flown several times since surgery and it hasn't affected her at all. She was taken by air ambulance to Stanford after her strokes because she was in such bad shape and they wouldn't have done that if it would have affected her. She's has flown like I said several times after that and was fine.
                                 Nancy

I have flown about six times over the last four years since I fould out I had mm. Have had no problems.
Sharon

Hey,
    I haven't had problems with flying but I had major problems traveling by car over the Sierra's on my way to and from Stanford when I had my bypasses.  It felt like a vice on my head.  Intense pressure!
    I have flown on all sizes of planes, even 20 seat props.  I can't say for every person.  Best of luck!
                            Newt

Dear Becky, Nancy, Sharon & Newt,
Thank you so much for sharing your flying experiences with us.
We really appreciate  :)
Gazou

sorry to tell you a bad experience,however my son jared had edas april 04 and aug 04.He had flown a few times after.Longest flight lasting about 2 hours he was fine.Then this past June we went to
vegas which for us is a 6 hour flight .About half way through Jared had an episode H e first began complaining about his ears.Next thing he was passed out. this was his main symptom prior to his surgery.We spent the day at the local hospital where they found nothing conclusive.I was told by dr flying back could have same problem so we drove.I dont think i will ever let him fly again He has been fine since .Good Luck.I hope all will be fine with flight.Most people seem to have no problem.
                                                    Donna

Try this link by the Aerospace Medical Assn.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

May help.
You also can request an oxygen tank if needed.
Kevin

Dear Kevin,
Thank you for the link and the valuable information. We are really looking forward to our trip so I want to be prepared as much as possible. Our son has flown overseas many times prior his first stroke and surgeries so we hope he will be ok flying 1 year and 3 months post surgery. We won't book tickets until we hear the results from his 1 year post surgeries check-up and will look into an oxigen tank on the plane as a precaution. Thank you so much!!!

To Donna,
I appreciate you sharing your experience even though it was not a good one. I am sorry you had to go through this, it must have been really scary! It is important that I have as much information as possible and be aware of all possibilities, so thank you!

Take care!
Gazou

Just thought I should update everyone on our trip as many others might wonder about flying and moyamoya.
Well, both our overseas flights were very successful with not one single incident. Now, I can't believe I worried so much about it   :D !!!
I guess it is important to learn to let go at some point so that life can be lived to the fullest. My son teaches me that every day!
Thanks again to everyone for the support  :)
Gazou

AMY'S MOM,,,,,,SOMETIMES THESE THINGS HAPPEN AND YOU DON'T UNDERSTAND WHY,,,,,,
I HAD A STROKE AND SEIZURE DURING MY FIRST SURGERY AND WAS IN A COMA FOR 2 WEEKS AND HAD THE BRAIN OF A 7 YR. OLD FOR QUITE AWHILE  :'( MY OLDEST SON WANTED TO PUT ME IN A NURSING HOME------MY HUSBAND SAID NO ------ MY MOM CAME TO FLORIDA AND TOOK CARE OF ME  :)
I'M SURE IT WAS A VERY HARD TIME FOR ALL MY FAMILY BUT GOOD NEWS IS TODAY NO ONE CAN TELL I'VE HAD SOoooooo  MANY STROKES AND 2 BRAIN SURGERIES (EXCEPT FOR MY LIMP ---- FROM MY 1ST STROKE) IN 1997,,,,,,,1ST BRAIN SURGERY WAS 10 YEARS AGO NEW YEARS EVE. (1998) :-*
IT JUST TAKES TIME AND PHYSCIAL THEARPHY  ;)

HANG IN THERE  YOU AND YOUR FAMILY ARE IN MY PRAYERS

Elaine Calvert