View Full Version : Muenke and hearing loss?
08-26-2010, 01:42 AM
I have a friend with a daughter who had bicoronal repair a couple weeks after Rohan. She has been diagnosed with Muenke syndrome and has some hearing loss. There was quite a bit of pressure on her brain before surgery. Anyone know if this is typical with Muenke? Was it the pressure?
IDK, sorry! I just wanted to say, "HI!!!!!!" :howdy You've been missed! I've been wondering how you are doin'. :hugg
Yes, mild to moderate hearing loss is one of the few identifiable traits of muenke. I do not think the pressure causes it, just the nature of the beast. So sorry your friend is going thru this, I am sure you are an encouragement to her!
And we have missed you!
08-26-2010, 09:27 AM
I have no experience with the topic, but wanted to say hi!!!
08-26-2010, 09:41 AM
:howdy Allison!! Hope all is well with you, I have no advice, I just wanted to say Hi!
My son has muenke syndrome. i dont know a great deal about it but our genetics docs said that hearing loss is the one thing that they keep an eye on.we r waiting for an appointment for hearing at mo.gosh wanted us back for this and i said it would be easier for us to be seen more local!so i rang my doc he had to send a tranfer to our local hospital they got funny with me cos he didnt send off the right papers so need to ring back nxt wk! hoperfuylly your friends doc r keep close tabs on there child! take care maz x
08-26-2010, 01:29 PM
Hey all!!! I've missed you too. I've given her the web address so I'm hoping she'll lurk a bit and maybe join up! We are doing well. Very busy with extra shifts at work and now getting a dog...not sure what I'm thinking on that :)
08-28-2010, 06:02 PM
My 8 year old has Muenke and mild hearing loss. She is on her 4th set of ear tubes also due to drainage problems.
08-29-2010, 02:12 PM
My three year old is Muenke with mild loss on the left side and on the border with the right.
Christina had some ICP before surgery but had normal hearing tests till about a year ago. I don't remember exactly when though. It's in Caringbridge. I know when she was 18 months old her hearing was perfect. It has come to what it is now since.
08-29-2010, 08:10 PM
When we last visited Simon's neurosurgeons, we told them about his hearing aids, and they said that they have several cranio patients that wear them. I am curious to know if it is the syndrome or the pressure on the brain as well. He passed the infant hearing screenings and always did well on those little tests with the ENT, but he was diagnosed with the bilateral loss when he was 4-1/2 years old. (Actually, it was the week before his second cranio surgery.) It is sensorineural and will not improve, but we have hope that it will be stable. Too many questions...not enough answers...
08-30-2010, 10:47 PM
Thanks for all the answers everyone. Interesting responses from a range of families. I will pass this on to my friend in case she hasn't had a chance to look. Makes me wonder too...Rohan has always been normal on hearing tests. We never had him tested for a syndrome, but we will keep on top of the hearing stuff to see if any loss develops later.
Powered by vBulletin® Version 4.1.4 Copyright © 2013 vBulletin Solutions, Inc. All rights reserved.