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Possible good news!!
- Mar 3, 2009 at 9:21 AM
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- Comments (3) Total Views (65) Everyone can see this journal post.
Since Kaitlyns neurologist couldn't really find too much info on the port wine stain below the eye, i went on the sturge-weber syndrome website and they have ask a Dr. section on there..so, I did, ..(I also sent her a picture so she could see it)..and here was my question:
My daughter is 21 days old. She was born with a PWS but is only in
the v2 area of her face below her eye, on her cheek, and above her lip. Its
only on the left side of her face. She went and saw a pediatric neurologist
and has a mri scheduled and a glaucoma test scheduled. No one can seem to
find any information on if SWS is possible with it being in just this
portion of her face. The Neurologist seemed to think that he knew that from
somewhere but couldn't find it in his medical books, nor get a definitive
answer. He said he would keep checking. Do you know anything about this?
Thanks so much for your time!
the v2 area of her face below her eye, on her cheek, and above her lip. Its
only on the left side of her face. She went and saw a pediatric neurologist
and has a mri scheduled and a glaucoma test scheduled. No one can seem to
find any information on if SWS is possible with it being in just this
portion of her face. The Neurologist seemed to think that he knew that from
somewhere but couldn't find it in his medical books, nor get a definitive
answer. He said he would keep checking. Do you know anything about this?
Thanks so much for your time!
Here was her response:
The risk of brain involvement with a pws in that region is very, very low to
none. I would not recommend the MRI be done (sensitivity of MRI at this age
is very low in any case) and I would not continue to worry much about that.
Anything is possible (brain involvement with NO pws exists for example), but
brain involvement is not associated with pws in this area of the face. It
does not hurt to have the eye examined but if the pws does not involve the
lower eyelid then the risk to eye is also very, very low.
Best,
Anne Comi MD
Anne M. Comi, M.D.
Director,
Hunter Nelson Sturge-Weber Center
Kennedy Krieger Institute
707 N. Broadway
Tower 100
Baltimore, Md
443-923-9150 phone
443-923-9160 fax
comi@kennedykrieger.org
none. I would not recommend the MRI be done (sensitivity of MRI at this age
is very low in any case) and I would not continue to worry much about that.
Anything is possible (brain involvement with NO pws exists for example), but
brain involvement is not associated with pws in this area of the face. It
does not hurt to have the eye examined but if the pws does not involve the
lower eyelid then the risk to eye is also very, very low.
Best,
Anne Comi MD
Anne M. Comi, M.D.
Director,
Hunter Nelson Sturge-Weber Center
Kennedy Krieger Institute
707 N. Broadway
Tower 100
Baltimore, Md
443-923-9150 phone
443-923-9160 fax
comi@kennedykrieger.org
So, I am pretty hopeful in her response. Kaitlyns doctor searched and searched through his books and found something that said where a study was done on 362 patients with port wine stain below the forehead and only 3 had the syndrome. This was only one study, and most of what we've read was above the eye. He said that he for some reason thought that he knew that if it wasn't anywhere on the upper region then there was really nothing to worry about (except for the glaucoma) but since he couldn't show me anything saying that, he would treat her as if she could have it. So, this is good news! I am still going ahead with the MRI because it is her Dr and his order and I'd rather be safe then sorry!
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