Hello.  About a year ago, I saw something on this board about someone hearing a train that wasn't actually there.  The person hearing the train sound learned that the noise was related to their MoyaMoya.  Now my 13 year old son with MoyaMoya is hearing the train sound.  Can anyone remember what the doctors said about the train sound?

I'm asking this because I reported the noise to my son's neurologist at CHOP, and she didn't seem concerned.  Then my son had his first 'horrible' migraine since he recovered from his surgery 4 years ago.  I'm worried that something may be going on with my son's MoyaMoya, and I'm hoping that someone can shed some light on the outcome of the other people hearing the train.

Thanks.

Hi,
I was only diagnosed this year and haven't read the posts that far back. But I'm wondering if your son is hearing a whooshing sound that keeps pace with his heart beat. It's called bruit, which is French for noise. I heard that sound at night, ususally when lying on either side. It became very slight immediately after the bypass surgeries, and now 2 plus months later, it is completely gone. It could have been due to turbulence in the blood flowing through an obstructed artery. My doctors kind of nodded their heads whenever I described the sound to them, but didn't offer any explaination. So this is just my take on what the cause was. If I should ever experience it again, I would head straight to my doctor and demand another MRI/MRA.
Kim

Hi Patti,

I usually remember posts, but darn if I can remember the one about a train noise, I’m sorry. I do however, remember many members explaining a sound, like Kim’s talking about, and they all explain it in a little different way. Here are some posts that I remember about the different sounds. In fact, I think I remember you asking about a heartbeat in the ears a while back that your daughter was hearing, and I think some of these posts address that as well. I sure hope it helps.

Heart racing in my head:
http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1141325957

Swooshing sounds:
http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1117128826

Thump noises:
http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1138998083

With all due respect, and for what it’s worth, I have to add that, from the stories I’ve heard over the past 5 years about the doctors here in Philly and CHOP, there’s no way on God’s green earth that I would put any trust in what the doctors say at CHOP regarding moyamoya.

Good Luck!

Your neighbor,
Mar

Thank you so much for responding!  Your emails are very comforting.  Mar, I agree with what you said about the Philly doctors.  They take the 'let's wait and see' approach with MoyaMoya.  Unfortunately, you could have stroke or worse while waiting.

Thanks again.