Jasmine before Surgery
Jasmine now after surgery
and laser treatments age 7
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Michelle Greco founder of Birthmarks and Hemangiomas InterNETwork Support(BHIS). Send mail to mgreco2660@cs.com I formed this support group in order to help people find the resourses they need about birthmarks and hemangiomas. The support group is also a way for us to keep in touch with each other and tell our stories to others who understand. Comfort and having someone there for you is a big help. I have met many nice people while creating and running these pages I hope to meet more and keep in contact with them.
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I have a seven month old daughter with a portwine stain of the face. I am considering laser surgery. The PWS is connected to numerous health problems. Thankfully she has nosighns of any yet. She is being checked for glaucoma tomorrow. If anyone knows if laser surgery will reduce the chances of any health problems related to the PWS please Email me morsecr@sosbbs.com Thankyou
name: Jean Lawry
email: jlawry@pacbell.net
Our daughter Allison has a cavernous hemangiona located on the side of
her nose right by her left eye.
She is thirteen months old and it still is continuning to grow. She was on
predisone to try to reduce the size and it made her
real sick. She has constant sinus and ear infections because the hemangiona put
a great deal pressure on her nose.
She is constantly on antibiotics. The doctors have seen will not perform laser
surgery on it because it is
too close to her eye. If you have any information re: doctors that would be
willing to help our daughter out it is much appercaited.
name: AmyF
email: AimlessF@aol.com
Addison is now 5 months old. At 2 weeks she got
a little red mark on her lower left cheek. It grew
for about 2 months then seemed to stop. It got
about the size of a kidney bean, kinda shiny and
raised a little. It hasn't grown since, as a
matter of fact it is showing signs of involution.
It has flattened out and isn't so shiny and we can
see some gray mixed in with the red. I'm writing
this because I know when I was looking for in-
formation all I found were the stories of children
with large hemangiomas. You never know if it is
going to continue to grow or just stay small.
Either way I have found that being informed is a
great comfort. This website was a HUGE help to me.
Thank you, please feel free to email me if you'd
like to chat.
Amy
AimlessF@aol.com
name: Jen
email:PennywiseJ@aol.com
Our daughter was born with a slightly indented gray patch about the
size of a quarter on her upper left arm. Our pediatrician told us that it was a
Strawberry Hemangioma and that it would
grow rapidly for about 6 months and then eventually go away completely on it's
own. The birthmark turned red and puffed up and has grown to about the size of
a silver dollar. (Our daughter is 7 1/2 months old now) We have met with two
plastic surgeons who told us that
the hemangioma will fade considerably over time but there will be some residual
scarring. We have decided to have her birthmark surgically removed
this December. We would love to hear from anyone
else who has had a hemangioma surgically removed.
name: Stefanie
email:emmalee987@aol.com
My two year old daughter has a strawberry birthmark about the size of a
quarter on her lip. It was very upsetting to us at first but now we don't even
notice it. It is realy other people's comments that cause us the most trouble.
I'm worried about the emotional and psychologial effect it will have on my
daughter.We have had two instances of the birthmark bleeding uncontrolably and
would reaaly like to see it gone. We have been quite successful in teaching
Emily that it is a beautiful and special quality that she has. In fact she seem
to have an attachment to her "Angel Kiss"(what we have taught her to call it). I
would really appreciate any info and support
name: Cynthis Neal
email:jneal@mcmsym.com
It is not my child how has a hemangioma but me.I am 26 years old and am
trying despratly to get my hemangioma removed.
Since I was a child I have had millions of people coment on my hemangioma
because it is a large group of notted blood vessals on my right upper lip making
it look like a gaint bruise.I pray every night that I will find a doctor in New
Mexico that can remove it.I don't want my child how is now 18 months old to have
to expain to her friends and teachers that her mommy did not get hit but just
has a hemangioma.
name: Sara L. Rodgers
email:sarar@psd.k12.co.us
My son Elijah is 3 and we had always thought that he had a hemangioma
on his lower left cheek. It grew a lot over the last year so we were referred
to a specialist. He said that it is a venous malformation. He also said that
the surgery would be plastic surgery rather than laser. Has anyone had
experience with this birthmark?
name: Kara Ann Busch
email:Karabusch@jmperry.com
I am 23 and was born with a large port wine stain on my left check,
covering most of my check and a portion of my eyelid. For the past 9 years I
have been receiving lazer treatment that has tremendously reduced the color and
its chances of enlarging. The treatment has improved my life in more ways than
physically. I would love to share my experiences growing up with a birthmark
and receiving lazer treatment to anyone that would like to talk to me.
name: Melissa Childers
email: dmathiso@sundance.usd.edu
Back in Sept of 92 Iwas in a car accident in which the car rolled over.
I ended up having to go to a Chiropractor. He took x-rays and noticed that my
T-10 vertebra was completely black. He sent me to a couple of doctors in town.
Finally one doctor suggested that I see a Dr. from the Shriners Hospital in St.
Paul, M.N. After he examined me he had me see the head of the Shriners
Hospital. In April of 91 I had to go in for a biopsy. They took a piece of bone
out and had it tested. A few weeks later the hospital called and told us what
it was and they wanted me to go back up to discuss treatment options. I was
finally put on Prednisone. I was on that for almost a year. Of course I had to
put up with all of the crazy side effects. After they took me off the medicine
I began to lose the weight that I had gained, and I started to feel like a
normal person again. I went back to St. Paul when I was 18 and the took one
final x-ray. It still showed I still had the tumor but it had shrunk quite a
bit. I am now 22 years old. I still have problems with the tumor in my back
every once in a while. I know I'll probably never get rid of it completely but
I have learned not ot take life for granted anymore. I know this tumor thing
can be real scary but there are a lot of treatment options and our doctor will
set you up with one that is right for you or your child. Believe me you will
get through this. If you have any questions or concerns or just need someone to
listen please write to me. Good Luck!!!
name: Corie Frysztak
email: corie@ims-chi.com
My daughter Ellie is 4.5 months old and has been treated since she was
3 months old for a hemanigoma on her nose. She's currently taking prednisone
and has had 4 laswer treatments. Fortunatley, it looks like the hemangioma is
responding to the treatment. After the next laser treatment, they will wean her
off of the prednisone and start injecting her nose. Has anyone else experienced
a hemangioma in this location, had this treatment and can tell me what the
ultimate outcome has been? She's still young and I think we treated it at the
right time. thanks for any support and help you can provide.
name: Kim Koop
email: ckoop@rocketmail.com
My daughter is 3 months old. About two weeks after her birth a red
mark appeared on her right cheek. As the weeks passed the mark grew and turned
bright red. At the age of about 7 weeks her cheek started to swell. Her
pediatrician diagnosed her with a strawberry hemangioma. In the last two weeks
the surrounding area by her birhtmark shows a blue tone under the skin. As
well, the swelling of the cheek is causing her ear canal to close. I am
wondering if she has a combination strawberry and cavernous hemangioma. Her
birthmark is now a purplish-red color. I wonder if it is starting to involute.
Her cheek is swollen about an inch high. Anyone have any advice or info??
name: Sue
email: sblackso@mailhost.eld.ford.com
I'm 33 and recently discovered I had a
3 cm hemangioma on the right lobe of my liver.
I understand this is quite common. I'd be interested
in hearing from others with hemangioma of the
liver.
name: Jenni and Eric Valentine
email: DOMAINE-VAL@msn.com
Our daughter, Eleanor, is three months old; and when she was just a few
weeks old, a strawberry hemangioma started forming on the outside of her left
eye. It soon began growing more within the eyelid, and right now the outside of
her eyelid is black and blue...and the inside has grown to the size of a small
marble. We have been told to simply try to keep an eye on it, with the hope of
avoiding treatment, and allowing it to run its course and go away on its own.
But since it may be starting a stigmatism in her eye, we will probably have a
steriod injection in about six more weeks. We live in Portland, Oregon, and we
will have been taking her to the Casey Eye Institute up at OHSU...they say they
see these quite often and not to worry. Eleanor is developing perfectly
otherwise...we're just starting to get tired of answering wierd questions and
comments from insensitive strangers... We are very glad to find this group of
support!
name: christi
email: christihayes@classic.msn.com
My daughter was born 14 weeks premature in August 1997, weighing one pound, six
and a half ounces. Eleven weeks later, she just hit four pounds and we hope to
bring her home from the hospital in a few weeks. She has a protruding
strawberry hemangioma on her forehead. It is about the size of a nickel, but is
pretty prominent on her tiny forehead. And it is growing rapidly.
We get different advice from everyone we talk to. Please share with me your
experiences with steroids, lasers, etc. It is very difficult to decide how to
proceed, since she is so very tiny and has already been through so much. But
she is only eleven weeks old and has never left the hospital and I am already
sad and weary at having to explain over and over again to people who look at her
or her picture and cannot see beyond the big red shinything on her forehead.
Thanks.
name: Liam
email: No1Famous@aol.com
My daughter had a hemangiomas on the sides of her face just below her
ears, accross her chin and on her lower lip. The sides of her face and chin were
treated with a pulse dye laser at a few months old (4 treatments 2 months apart)
and the results were great. Her lower lip grew so fast that it split open and
bled for about two weeks intil it finally healed. Due to the large size of her
lip, about 5 times normal size and scaring, my wife and i had her lower lip
operated on at about 2 years old and the results are a 100% improvement. She is
now 4 years old and there are no longer signs of the hemangiomas on the sides of
her face and except for a scar under her lower lip the results have changed my
daughter's life. I am a member of the Belle Foundation, a non-profit
organization based in New York City to help families with information and
support with hemangiomas.
name: Pat Stegmaier
email: pattyrs@hotmail.com
Hi. My name is Pat. I was born in Parris Island, S.C. That's because
my Dad was stationed there as a Marine and Mom went to visit and there I was! I
was normal at birth. Mom and Dad tell me that about two weeks later a "mark"
began to form on my right cheek. This mark grew over my nose, into my right
eye, and over my upper right lip. I was treated in NYC (where my family is
from) at Sloan-Kettering, known then as St. Joseph's Memorial. When I think
back about it today, it seems that the hospital experience consumed my entire
childhood, although I know that is not true. They tried dry ice treatments and
ligations (failed), which were common in those days. I would have to say that I
wholeheartedly support any parent willing to get his/her child early help. I
would ask God to bless you for your foresight. It really hurts to be different,
although such "difference" can go a long way to creat a truly dynamic,
compassionate and independent human being. I can't t!
ell you how much it has meant to
me to find this particular group. I've been searching the web to find a doctor
in the South Florida area who might be informative enough about the subject of
hemangioma to repair my upper lip -- which, OF COURSE, hangs over my lower
right. It's taken a lot of me to share this and I hope someone will be able to
offer some insight and point me in the direction of a skilled surgeon who
specializes in hemangioma. In case my e-mail doesn't show up in this message,
please feel free to send mail to "pattyrs@hotmailcom." I would love to hear
from each and every one of you. Pat
name: Betsy Malone
email:bmalone55@hotmail.com
I was born with a hemangioma under my right eye and am now a 42 year
old special education teacher. When I was an infant, my parents were advised to
have the hemangioma removed with a dry-ice treatment that was done 29 times
during my first three years of life. This somewhat tortuous treatment left me
with a burn-like scar. At the age of nine, my parents took me to a plastic
surgeon in New York City who covered the scar with a skin graft, and used some
sort of electric needle to lighten some of the other spots. This resulted in a
smoother look and I was able to cover the scars with make-up. As I have aged and
have gone through 3 pregnancies, I feel as though the hemangiomas have grown,
are more noticable, are much bumpier, and are a darker color. I have been
getting more comments from strangers, asking "Did your have an accident?", or
"Did you get stung by a bee?" No matter how old you are, these comments stick
with you, and you search for ways to "fix" it. I have bee!
n to Yale University Hospital in
New Haven, Ct. and had an MRI done to see what was happening, but after
reviewing the results, they felt that they should do nothing because none of my
organs were being affected (they are very near my eye, sinuses, and nose.) It
was not fully explained to me, but I think that they were worried about
hemoraging, or new growths forming if these were removed. I was wondering if
anyone has been in this position and can offer some advise.
