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Old 09-12-2006, 02:39 AM
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Question Odd symptom I have-wondering if anyone else has experienced this?

I have a small'ish pws on the left side of my nose that extends to the very edge of my cheek area, as well as a couple of "dots" about 1 cm. in size below the nose and to the side near the cheekbone area.

For about a year when I have scratched/touched the very edge/base of my nose where it meets the face (where there are little red capillaries) I have a sensation in my lower eyelid where the lashes are. When this first happened I thought I had a hair tickling that area of the eye-that's what the sensation feels like.

I can reproduce the sensation at any time. I just touch my fingernail to the area and I feel the sensation in my lower lid. It is the strangest thing and I have never heard of anyone else having his happen. I'm wondering if it has to do with my PWS.

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Old 09-12-2006, 12:28 PM
missy missy is offline
Join Date: Apr 2006
Posts: 1,794

The only time I've ever heard of anything like that is in cases of bell's palsy (I have / had bell's). In that case, when the nerves take a long time to heal, they sometimes cause movement and feeling in the wrong muscle groups. As a result of my bell's I know way too much about facial nerves!! LOL

I wonder if your PWS could be interfering with a nerve grouping?

Honestly, it's a symptom I've never heard of with a birthmark, though. Others here will chime in soon... perhaps Hank has more information on that than I do.

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Old 09-12-2006, 03:54 PM
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Default Bell's palsy had crossed my mind

Another symptom on the same side of the face, in between my PWS and the eye... A few weeks back I had what appeared to be a pulsing right where my eye socket and cheek bones join-it wasn't constant, appeared every night for about two weeks. It was a fast pulse. I couldn't feel it most of the time. I couldn't make it stop. I felt it once or twice when I was stressed.

Now it feels like the area is a little tender to the touch underneath my PWS and surrounding area (about 2 cm. across). It could have to do with my pushing on the area to see if I could feel anything going on underneath the skin though.

I am getting insurance coverage in October so I will be getting a check-up and will mention my symptoms then.
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Old 09-12-2006, 05:57 PM
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It may just be a nerve in the PWS. I know when I am having my hair done, certain ways they pull on my hair makes my nose itch and feel like I have to sneeze, lol. I hope it is not something more serious, keep us updated.

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Old 09-12-2006, 07:24 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533


I personally have not had that kind of a sensation, but I have had several other kinds of sensations in the face. I think Maureen is onto something about the PWS being involved into the nerve itself. It would diffently explain a couple of my sensations. Maybe there is two or more nerves that are attached some how from the PWS or are rubbing just right. A nerve doctor would be able to give you a better theory then I would be able to why it is doing it.

I would strongly recommend getting an eye exam just to make sure that the sensation is not causing any damage to your eye. Plus, being that your PWS is that close to the eye also have them check for glaucoma since you do have the risk of it. Being that I have had vision loss because of my PWS because I have PWS in my eye but do not have glaucoma I have always said better to be safe then sorry if something is happening and you would not know until it is to late. Glaucmoa is that why.

One other thing after you get your insurance something you might want to consider is trying some laser treatment on your PWS that could possibably slow down the pulsing. I have that also. It happens to most people when they are active, angry, in the shower, or anything else that could get the heart pumping. Some PWS will even go to the extent of getting darker for a short period of time like mine does when I lift weights.

If you are interested in laser treatment you might be able to find a dermatologist in your area in the resource section that is at the top of this page. If you can not find one let use know and someone on this group might be able to recommend someone.

I hope this helps and if you have any other question please ask we are all here for you.
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Old 09-12-2006, 11:14 PM
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Very interesting!
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Old 10-06-2006, 02:20 PM
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My 5 year old has a PWS on the left side of his face covering 80% and at age 2 1/2 he was dignosed with sensory intergration dysfunction. The reason is that his sensation in all his body is wired wrong and he has the sensations in diffrent places at diffrent times and is according to what he wears, to who brushed his arm as he walks by them, or even if someone with a certain frequency in their voice talks. He is an unusal 5 yr. old and can explain things, he says that at times it is very painful and sometimes just uncomfortable. He has went throught therepy and learned how to conrtol his behavior in certain situations and what to do to fix them. When I read about your problem with the sensation in your face that is the 1st thing I thought of. Do you wear glasses that might be to heavy or to light to the touch do you wear make up? Is it in certain light?
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