Are ear problems associated with pws? - Vascular Birthmarks Foundation Forum
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Old 11-12-2009, 08:01 PM
Tiggertoo Tiggertoo is offline
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Join Date: Nov 2009
Posts: 2
Default Are ear problems associated with pws?

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 there?? Has anyone else ever heard of this?
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Old 11-12-2009, 11:32 PM
missy missy is offline
Join Date: Apr 2006
Posts: 1,794

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.

Others will chime in soon, I'm sure!

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Old 11-13-2009, 03:54 AM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,054

This very well could be connected and I would highly recommend having it looked at closure. Please email me if you need any help

my email address is vbfadvocate @ Live. COM (no spaces)
Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
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Old 11-14-2009, 02:24 AM
kaykay kaykay is offline
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Join Date: May 2006
Posts: 233

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.

oh and believe it or not my ear is pierced

Yes get it checked out
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Old 11-26-2009, 05:00 PM
VBeck VBeck is offline
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Join Date: Nov 2009
Posts: 1
Default Ear-Sinus Problems

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 by a Charles Cale, but am still searching for more information. If anyone knows of some good information regarding this, please help.
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Old 11-22-2011, 02:56 AM
vcumsw vcumsw is offline
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Join Date: Nov 2011
Posts: 2

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.
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Old 11-22-2011, 02:55 PM
abatie abatie is offline
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Join Date: Oct 2009
Posts: 240

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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