hello I am a 38 yo female, and I have a pws on the left side of my face which happens to go into my inner ear and eyelid. Recently I started having alot of problems with my ears and sinuses. The ENT I went to asked if I ever was checked for abnormalities in my ear canals and sinuses due to my pws. I never knew there was a connection...is there?? Has anyone else ever heard of this?
I have not heard of that, per se. I have heard people report that, as they grew older, they would have more frequent and varying problems associated with their pws, simply because of growth, blebs, or cobbling. So, I could see how it could happen.
my entire left ear is covered with pws and it goes inward how far i am not sure but other than hearing loss and sometimes trouble with ear infections thats about it. May have some kinda crust build up that my doctor syringes sometimes. Doctors put " grommets" ? in my ear. Blew an ENT's mind when i told him but hey thats probably the only reason why i have some hearing sometimes. body temps affect my hearing.
I am a 42 year old women with a PWS down my left face, ear and neck. I have had increasing trouble with my ear-sinuses, including some hearing loss. I was just told be a doctor (not my regular physician) yesterday that my PWS is linked to the problems I am experiencing and that she has seen this before - first time I ever considered a connection or heard of anything like that, but it totally makes sense because I have never had a problem on the right side. I did find an article referring to ear/sinus complications on Birthmarks.com by a Charles Cale, but am still searching for more information. If anyone knows of some good information regarding this, please help.
i get ear infections easily in my right ear, covered in pws but have never had one in my left ear, not covered in pws. i was told by my doctor that vascular malformation effected how my ear canal formed making it easier for me to get ear infections in that one ear.
I don't have any medical knowledge on this but I would like to share our experience with our daughter. She has CMTC and has ear issues for her entire two years. She has had constant ear infections, has had tubes placed, and is now being considered to have a second set placed. She had hearing issues at six months of age that continued until after she was a year old when she had an ABR done to rule out auditory neuropathy. She is again having some hearing issues similar to how they started earlier in life. Our specialists said that it could be related to the CMTC and her blood vessels even though her CMTC appears on her leg. They can't be sure because so little is actually known about CMTC. We continue to monitor her and do have her hearing checked regularly. I am certain that she has affected blood vessels throughout her body although her CMTC is only present on her leg.
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