Welcome to Birthmarks and Hemangiomas InterNETwork Support Group Page 12
name: ROBIN BARTOLI
from: CT
email: MORSEMVG@AOL.COM
location: DAUGHTERS
CHIN
MY DAUGHTERS STRAWBERRY HEMANGIOMA CAME OUT ON HER CHIN ABOUT 10DAYS AFTER
HER BIRTH. IT STARTED SLOWLY GROWING TO OVER THE SIZE OF QUARTER. IT WAS LARGE AND
PURPLE AND BUMPY. I BROUGHT HER TO 5 DOCTORS WHO TOLD ME TO LEAVE IT ALONE. SHE IS
NOW 2 AND QUESTIONED WHATS ON HER CHIN. I TOLD HER A BEAUTY MARK BECAUSE SHES SO
BEATIFUL. IT HAS SHRUNK ABOUT 1 INCH IN DEPTH AND IS MUCH LIGHTER. ITS NOW A LITE
PINK ITS HAS FADED A LOT, BUT NOT ENOUGH FOR US. SHE IS GETTING POKED IN THE FACE
BY KIDS ASKING WHAT IT IS. THE WORSE ARE THE GROWN UPS ASKING WHATS ON HER FACE OR
DID SHE WALK INTO WALL OR FALL. I HAVE BEEN TAKEN ABACK BY THE REMARKS OF STRANGERS.
THIS WEB SITE LETS ME KNOW IM NOT ALONE. IM PLANNING ON BRINGING HER TO ANOTHER DERMATOGIST.
I WOULD LIKE TO LOOK INTO LASER OR STERIODS FOR TREATMENT EVEN THOUGH THEY SAY LEAVE
IT ALONE.
name: Daisy Zabala
from: Philippines
email: daisyz@dar.gov.ph
location:
lower left shoulder
My daughter is 7 month old now. I though it is just an ordinary
bithmark which appeared when she was 2 weeks old. Its size was about 1/2 inch. Now,
it has grown more prominent one inch and has raised. My pediatrician informed that
it is hemangioma, and i was alarmed. That is why, here i am sharing my daughter's
experience. For now, i am observing this birthmark, if this eventually disappear
when she grows old. I am still looking for a specialist for this. My daught still
lucky and I thank God for it, for hemangioma did not grow anywhere in her face.
name: sharon mann
from: ohio
email: smann20194@aol.com
location: outer
thigh of left leg
she was born with this birthmark and when she was just about
2 yrs old, we took her to the cleveland clinc and had laser surgery done. This birthmark
bleeds and it can bleed for 15mins to an hour at times. We are at a standstill as
no one knows how to help us. We had the laser surgery done and it made the birthmark
lighter but the so called "berries" that bleed slowly came back 10 months
later. She is 14 yrs old now and deals with this pretty good but we are still searching
for help and answers. With all the blood in this left leg, her leg is bigger than
the right leg and her one leg is 1/4" shorter than the other. she has had surgery
done on it several times and nothing seems to work, the birthmark itself has become
lighter over the yrs
name: jessica
from: texas
email:
location:
left cheek under ear lobe
: Catherine was born w/ a strawberry birthmark. When
she was about 1 month, we noticed that a bump was forming under her ear on her left
cheek. Her ped. told us that it was a hemangioma and that it would go away. He said
that it is common and not to worry...but...it stopped growing at 4.5 months but has
started again. It takes about 3/4 of her jaw line and is raised about 1/4-1/2 inch.
It is a pink-red color. I am more worried about it than anyone else and would like
to speak w/ someone who knows what I'm feeling
name: Lisa Munson
from:
Texas, USA
email: lisa.munson@interflect.com
location: bridge of nose
My
daughter's birthmark first appeared at 6 weeks as a small red dot on the bridge of
her nose. It stayed flat and unchanged for about 2 to 3 weeks, At about the third
month, it started growing rapidly. It is now about the size of a large grape, remains
skin-colored and still has a small red dot. Her pediatrician recommended seeing a
pediatric dermatologist, who was basically NO help. I'm a former medical reporter
and in the medical media relations business and knew of a well-respected pediatric
plastic surgeon in Dallas. He has a clinic devoted to cranial facial deformities
and vascular malformations/hemangiomas. I have complete trust in him; he's exceptionally
knowledgeable about these and treats hundreds of them. He's recommending oral steroid
therapy for 6 weeks. The only side effects we are aware of include GI upset, irratibility,
cataracts, loss of appetite, increased appetite, sleepiness and a few others. Are
there more serious ones? He's using an usual cortisone called Cortef. His philosophy
is treat them quickly when they involve the face. My only regret is that I didn't
take her immediately to a plastic surgeon well-versed in hemangiomas. DO NOT WASTE
YOUR TIME WITH PEDIATRIC DERMATOLOGISTS AND PEDIATRICIANS. Too many go by the old
school of thought, "they'll eventually go away on their own." From what
I've researched, they don't and modern medicine offers many choices today. As a parent
you have to take into consideration the growth cycle potential (in our case it may
affect her vision) and the cosmetic aspect. ONE IMPORTANT NOTE, DOES ANYONE HAVE
ANY RESEARCH ON THE CAUSE OF HEMANGIOMAS? SOME THEORIES I'VE COME ACROSS INCLUDE:
1. high levels of estrogen 2. genetics 3.a newly discovered immunohisto-chemical
marker (just announced Jan. 2000)
name: Corda Hill
from: Pennsylvania
email:
hillabee@yourinter.net
location: entire right buttock extending down to Right
knee
: Had initial surgery at Children;s hospital Pitts. pa. Dr. Gordon , 3 months
ago , on June 28 had second surgery, they anticipate 4 or 5 more surgeries, and
I would like information on this type of malformation and anyone who has had similar
surgery. He was born with it and was initially diagnosed with Hemangioma .
name:
Colleen McCasland
from: Florida
email: ronncoll@bellsouth.net
location:
right back of neck at the base of skull
We live in Stuart, Florida which is about
20 miles north of West Palm Beach. My daughter is 13 months old and has a cavernous
hemangioma about the size of two golfballs on the base of her neck. I have been
to several different doctors a dermatologist, 2 plastic surgeons, and am currently
seeing a pediatric surgeon. We have tried the prednisone with no reward. The hemangioma
is quite large and she is constantly pulling on it. It has recently started to scab
up as well. I am unhappy with my current course of treatment. The pediatric surgeon
is currently using the "wait and see" approach. When I visited him last
he told me that in his opinion the hemangioma would not involute much more than it
already has. He told me surgery would be risky and could leave my daughter with
an open hole at the base of her skull. He said there probably wouldn't be enough
skin to close the hole because the base was very wide. He then told me that he would
perform the surgery if I choose to do so but it would be very risky with a very high
chance of infection. He said it was my call even when I asked him for his opinion.
I don't want my daughter to keep being pointed at and whispered about every time
she leaves the house. I am not even sure if my HMO is going to allow the surgery.
I was wondering if anyone could recommend any good doctors in our area that specialize
in this field. And if not if there is any information you could give me that you
think might help me! Thank you so much for your time and your consideration!!!
name:
Kim Stater
from: Illinois
email: Allysmom99@mail.com
location: left whole
side of her face including eye, nose, mouth(inside&out) and inside of ear
:
My daughter, Allyson, was born with what they thought was a port wine stain across
the whole left side of her face to her ear. 4 days later her upper lip began to
ulcerate. That is when they thought maybe it could be a hemangioma. They immediately
put her on prednisone, and she had her first laser surgery when she was 29 days old.
They thought that the laser could possibly stop the ulceration. After the surgery,
she developed more ulcerating, was in the children's hospital for a week until they
got it stopped. 2 weeks later she had another laser surgery and this one caused
an ulceration that extended up into her nose. Needless to say we had no more laser
surgery after that. The laser surgery did get rid of most of the redness but it
caused a great deal of scarring and she only has half of a top lip now. It is also
a cavernous hemangioma, so it began to swell at about 9 months when they started
decreasing her prednisone. She is now 18 months old. It has stopped growing but is
not yet in the involution stage. We get all kinds of stares when we go out but that
doesn't stop us. We think she is gorgeous! Children seem to be a little frightened
of her and she has been called a monster baby by some children. It really hurts
and I am scared of the day when Allyson realizes what they are saying. Please feel
free to e-mail me at anytime!
name: Sarah Petrescu
from: Ohio
email:
micpetrescu@aol.com
location: Middle of her forehead
: My little girl will
be 1 July 14,2000. To make a long story short. My little girl is learning to walk.
On July 1 she stumbled and hit our couch and her hemangioma split wide open. There
was blood everywhere. We took her to the emergency room, they tried to glue it together.
It hasn't worked. We saw a plastic surgeon in Cleveland Oh (which is two hours
away) he said he is going to remove it August 1st. He is going to cauterize it.
I am very, very nervous. And I am not sleeping much because althought it has a
scab over it, it still bleeds.
name: Liliana Estrada
from: New York
email:
Leestrd@aol.com
location: leftside of the nose close to the left eye
My son
was born premature, at 34 weeks. He stayed in the hospital for approx. 1 months
we started noticing a little red mark on his nose, I thought it was from birth.
One day I asked the nurse why was the mark getting bigger, I was told my son had
a hemangioma, that it would get worse before it would get better. Being ignorant
to this "hemangioma" I did not ask any questions. when Matthew came out
of the hospital we were advised to take him to a dermatologist, she performed 3 laser
surgeries, but it made it worse and the growth was getting closer to his eye. I
finally, freaked out and said there has to be some kind of specialist for this, and
I was referred to a Dr. Krystal, at 3 months of birth he put Matthew on predisone
and this immediately stopped the growth. Matthew is now 18 monthis and his hemangioma
is turning greyish in the middle and it is still a little pink around the area.
I was told that by age 4 or 5 we would know if Matthew will need reconstructive surgery
to the nose.
name: Valerie Jones
from: IL
email: Vjace@aol.com
location:
upper lip
My daughter is 6 months old. She has a hemangioma onher
top lip
in the center. She was born with it. She was given
prednisone at about 6 weeks
of age to stop growth. We have seen
no change to date.
name: Stacie Ritter
from:
CA
email: critters3@earthlink.net
location: right between the eyes on forehead
Her mark appeared at two weeks old. It is bright red, but flat. It is in the shape
of a diamond, a little smaller than the eraser on the end of a pencil. Her pediatrician
says that it is no big deal, that it will most likely go away within a few years.
My problem isn't the mark, it is OTHER people. Why can't they comment on how beautiful
she is, instead of "that mark?" She is now 2 months old, and I want to
get rid of it. Kids nowadays are so cruel, and a young girl's self-esteem is so
fragile. My doctor says not to do anything yet, but isn't it better to do something
when it is so little, and she is so young? Please write back. Thank you very much.
name:
Daphne Washburn
from: Seattle, WA
email: mitsy@nwlink.com
location: on my
daughters face
Please come visit my website about my daughter's hemangioma.
The address is https://www.angelfire.com/wa2/hemangiomabirthmark/index.html
name:
Jacque & Frank Blair
from: California
email: nativetxn@hotmail.com
location:
underneath the right eye near her nose
On 09/23/99 our beautiful daughter Adeliana
was born six weeks early. We were concerned about the bruise on her underneath her
right eye near her nose. After a couple of weeks the "bruise" began to
swell and she was diagnosed with a possible clogged tear duct and was put on an antibiotic
treatment. A few days later the "bruise" had grown very rapidly and she
was diagnosed with a Vascular(strawberry) Hemangioma. We were referred to an Opthamologist
who wanted to wait until it started to affect her vision. After a couple of weeks
Adeliana'e right eye was almost shut due to the size of the hemangioma. She was
seen by her pediatrician who referred us to a pediatric dermatologist who has been
wonderful. She began Adeliana on steriod treatments that worked. She has been off
of the steriods since May,2000. The hemangioma appears to be slightly bigger now
but that is because of all the wieght she lost. I have since been looking into laser
surgery and was told that it was not a good idea. Our dermatologist stated that
our daughter would be truamatized because she would have to be held down and blind
folded. And not only that but that laser surgery would not help the size of the
hemangioma but only the color. I am looking for someone who has had the success
with reducing the size as well as the color of laser surgery. I have put my faith
in God and pray everyday. I also thank him for a beautiful healthy daughter. I
don't even notice the hemangioma anymore until some inconsiderate, cruel person gasps
in horror and asks, "WHAT HAPPENED!!" Everyone hang in there, this is
a very trying time but I know that there is a miracle around the corner for each
and every one of us. God Bless and my prayers are with all of you. Thank you.
Please feel free to email with any info....any what so ever!!
name: sukanya
from:
Bangalore,India
email: sukanyas@rediffmail.com or sukanya@gnblr_til.global.net.in
location:
Left cheek - just abt half an inch below left eye
My daughter's name is Anahita.She
has just turned two.She was born with a hemangioma which was just a small red dot
on her left cheek.It has grown rapidly since then and now is abt 2" dia,just
below her left eye.We hv consulted our paediatrician and plastic surgeons and they
are of the view that no surgery is to be attempted till she is at least 5 to 7 yrs
old.I really do not know how advanced the techniques are for a hemangioma treatment
here.Please let me know of any cases of hemangioma treatments done in India.
name:
Summer Wilson
from: Kentucky
email: summerwku@aol.com
location: Infants
lower lip
Our experience is very similar to those that I have been reading about.
When my daughter Ellie was born in April, she had a normal, perfactly formed lower
lip. Over the first couple of weeks, her lip developed a red sore that got worse
and worse. Our pediatrician thought it was a feeding blister and would go away.
He was way wrong! At six weeks we were referred to a plastic surgeon who explained
treatment to us. She had the candella laser surgery the next day and began steroid
treatment. She is now 3 1/2 months old and has had 2 laser surgeries and we are
finishing up the steroid. So far we are very pleased with her progress. Her hemangioma
is flat and the redness is gradually fading. At a later time she will have to have
reconstructive surgery to repair the scars but we expect superior results.
name:
Lisa Wright
from: California
email: ibwright@juno.com
location: My daughter's
left cheek/left side of nose/lower eyelid
Our 3rd daughter, Keiren, developed
her hemangioma starting about 3 weeks after her birth. It is now the size of the
end of a quarter and is raised about 1/4 inch, deep red in color. It has grown up
into the lower eyelid so that it is partially blocking her vision. She is 3 months
old and is being treated with topical steroids, which don't seem to be making a big
difference. Her birthmark is turning greyish/skin-hued over 75% of it, which I'm
told is a good sign, and the growth has slowed significantly. We are scheduled to
see an ophthalmologist next week to determine if further treatment is necessary,
but I'm told steroid injections on such a young baby in the eye area will require
general anaesthesia. My heart just breaks for our sweet, happy, smiley little girl!
I
wanted to offer some help for those who receive the millions of stares and questions,
as I have experienced. I am on a crusade to educate the public about their lack of
manners!! I try to give everyone the benefit of the doubt, that they are merely
curious and don't mean to be hurtful (though they are!). Our culture judges people
based solely on their beauty or their intelligence, which is tragic. I will be raising
my kids to see the beauty of character, self-sacrifice, hard-work and compassion.
And by the way, when people make comments about our daughter, I always say back
to them, "Yes, but isn't she gorgeous????!!!"
name: Sara Rios
from:
Norridge IL.
email: anglebabies11200@hotmail.com
location: Left eye by eye
lid
My son Joel Angel was only 2 months when I noticed a small raised dot on
his left eye brow it looked like mosquito bite. Then it got bigger and bigger over
the months with red veins. Doctors first thought it was a cyst but then got red with
veins. He went through a ct scane could not find anything. Doctors said its only
a hemangioma a birth mark that goes away. I'm feeling really deprest about this because
he can loose his vision on his left eye. I really want something to be done. One
of the options they told me was injecting steriods but I really don't want that because
of the side it has and him only being 7 months of age. I was wondering if it can
be removed or is dangerious to remove it because of the veins. If anyone had that
experience of removeing a hemagioma. It seems that no one wants to help me and its
no big deal to doctors that it goes away on its own. If theres anyone with info please
help.I love my son so much I wish this never happend to him. I don't want him to
loose his eye sight. don't care what other people say when I go to the store or
out anywere there just ignorant people to me. He's only a baby give him a break it
just breaks my heart. So if theres anyone with info with other options that can help
e-mail me back. THANKS
name: Don & Michelle O'Connor
from: Florida
email:
danick220@earthlink.net
location: parotid and another in front of neck
My
daughter has 2 life threatening hemangiomas, both cavernous and extremely large..one
parotid, & one in the front of her neck. We've been thru it all...laser surgery,
steroids, even had to consider interferon, thankfully tho, she made it thru the 1st
year with out heart failure (Thank you Lord!)...now what's left is the huge masses,
and the deep red strawberry marks. From all my research and her wonderful doctors,
I know they will go away, but as her parents were very concerned now how this will
effect her self esteem. We think from the size, that her hemangiomas will take more
than the "typical" 6 years to involute, and they won't shrink by school
age. Should I just be thankful she is still with us?! I know I am!!! But also people
can be so cruel when they see her. Now my worries are focused on whats best for
my daughter, and her self esteem, etc...I'm told she will probably need surgery at
age 4. She is *such* a beautiful happy little girl, and it saddens me to see how
people judge her based on her hemangiomas :(
name: Sasha Wybourne
from:
England
email: jeanwinch@nationwideisp.net
location: side of face
This
is for my son who is 8 months old. There was no mark at birth, but it began to appear
from day 2, very gradually, and very faint at first. It was two weeks before the
midwife thought that it might be a birthmark, until then we had thought that it was
a slight heat rash. It covers part of his skull, all of one ear and comes across
part of his face. We understand that it is a strawberry, as it is raised. It becomes
more raised when hot. His skin is very raised behind his ear (about one cm), and
this can sometimes split and become infected.
name: Alivia Haines
from:
PA Reading
email: RRMANI@.com
location: Poroidid area. Right side of face.
From behind ear, down into neck, on cheek. Size of a racketball..
Was dicovered
at 19 days old. Grew from size of grape to a softball in 2 1/2 week. Was hospitalize
for 5 days. with her heart beating at 220. she needed to have a blood transfusion.
at 5 weeks old. She was treated with steroids for 2wks. and it shrunk.. With only
being off steroids for three weeks........ It has started to grow again. Now she
is 14 weeks old and is hospitalized again for 2 days and they give her steroids again.
And we have discussed embilazation .
name: jessica
from: texas
email:
mjsmith@usaonline.net
location: left eyelid
my daughter is 5mo old and has
a superficial hemangioma on her left eye lid. it has currently stopped growing.
we see a optomologost who has advised us to 'wait and see' we have agreed to do
that for now since her vision is not being greatly affected. she has developed a
slight astigmatism. if anyone is in a simular situation we would love to be in contact
with someone going through the same type of thing. i pray all these children will
be healed of this birthmark and its suffering effects. god bless.
name: Jennifer
and John Berg
from: Indiana
email: threehikers@fwi.com
location: underneath
right eye
Our daughter, Amelia was two weeks old when she developed what looked
like a scratch underneath her right eye. Slowly over the next few weeks it turned
into a red teardrop stain from the inside corner of her eye down to the middle of
her cheek. The birthmark has since grown larger and at her 2 month visit to the
pediatrician, we were informed that she had a hemangioma. The pediatrician referred
us to an opthamologist to make sure it was not affecting her vision. Amelia is
now 4 monthes old and has been seen by the opthamologists twice, the visits have
shown that the hemangioma is not blocking her vision but it has grown larger. It
is now raised and is larger than the size of a quarter. The swelling underneath
the birthmark has also moved over to cover the middle portion of the nose. We have
discussed steroid shots for treatment only when it starts blocking her vision. After
reading other parents stories, we are concerned now if we should treat it while she
is young or should we let it run its course? Should we see a surgeion for a second
opinion? We would also like to know if there are any severe side effects to steroid
treatment? Any comments will be very helpful.
name: Maria Wyman
from:
New Jersey
email: sofifi97@aol.com
location: forehead, just above right eyebrow.
1st day after birth Sofia had a small light pink flat spot on her forehead,
ofer her right eyebrow. It turned red and increased in diameter within weeks. The
hemangioma began to raise after 1 month. It continued to grow for 5 months to the
size of a half dollar(though more oval in shape)and raised about 1cm in height. It
stayed bright red and was so plump (it looked like it may pop) for about a year after
it stopped growing. At 1 1/2yrs old a blackish spot appeared in the center of the
hemangioma. This mark came and went a couple of times. During this phase the red
began to fade and the hemangioma took on a grayish layer. By age 2 it looked much
less plump, 30% of it turned flesh tone. Now Sofia just turned 3 and it is about
50% fleshtone. It looks shriveled along the sides most times, though if she has
fever or cries for a long period it temporarily plumps up. At 3 months old she had
a short series of cortisone injections into the hemangioma. We discontinued them
because it continued to grow and we were uncomfortable with using a steroid on such
a young child. It may have slowed the progression, though if so, not by much. We
were told to apply pressure to the hemangioma with a gauze wrapped around her head
(like a headband)which seemed primitive to us. We tried anyway, but she wouldn't
keep it on and cried relentlessly. We gave up on that too. We went to a highly
recommended Laser Dr. in NYC. He said he wouldn't touch her for at least 2 years,
and he didn't feel that laser would help her raised hemangioma. He told us that
the laser would only lessen the red coloring, and do nothing for the bump itself.
Discouraged we kept up with a caring dermatologist for monitoring. At about 20
months we began visiting various plastic surgeons. Some saying not to touch it until
she was at least 5 or 6 yrs old. We found one who thought that 3 or 4 yrs old was
more appropriate. He was sympathetic to our concerns as parents of the emotional
impact it may cause Sofia in school. The surgery he is contemplating involves tissue
expansion over the course of 6 weeks and then cutting along the hairline and brow
line. The excision may be able to be moved to the side of her head instead of on
the front where it is now. That last part is the only positive of that whole procedure.
My husband and I are totally uncomfortable with all the cutting and the tissue expanders.
But, it is too large for a simple excission. The Dr. has recommended we see Dr.
Mulliken in Boston (we have a pending appt)for a second opinion. I have also found
out, thru the Internet, that Philadelphia and NYU have programs specializing in this
as well, and I will be making appointments there too. After finding this and related
sites, I have seen pictures and hear stories about certain lasers that shrink these
growths and I am curious about them. I have been told that if Sofia's hemangioma
involuted by 30% a simple excission is possible. I am anxious for more information
on lasers with deep tissue penetration. It may save lots of scarring on her beautiful
face. Thanks for providing this forum.
name: MINDY DRAKE
from: OHIO,
U.S.A.
email: MDRAKE@WORTHINGTONINDUSTRIES.COM
location: L-5 VERTABRAE, ETC.
I AM ALMOST 40 YEARS OLD, AND HAVE HAD LOWERBACK PAIN MOST OF MY LIFE.MY S-1 DISC
RUPTURED 3YRS AGO. AN MRI SHOWED THAT I HAD A HEMANGIOMA INSIDE MY L-5 VERTABRAE.MASSIVE
RADIATION WAS ORDERED. AFTER TREATMENT, THE TUMOR WAS GONE.6 MONTHS LATER IT CAME
BACK.I FOUND A PROTOCOL FOR TREATMENT AT THE NHSA. BY THE TIME I GOT THERE, IT WAS
GONE AGAIN. WELL, I'M HAVING SYMPTOMS, AGAIN. AND WILL BE GOING IN FOR MORE TESTS,
THIS TIME, INCLUDING MY BRAIN. MY MOM DIED FROM "HEMANGIOSARCOMA" WHEN
I WAS 12. SO, I'M PRETTY SCARED. NONE OF THE DOCTORS AROUND HERE SEEM TO KNOW MUCH
ABOUT HEMANGIOMA, SO I NEED ALL OF THE INFO I CAN GET, SO I CAN
EDUCATE THEM.
I JUST STOPPED TAKING A DRUG CALLED "BACLOFEN" IT IS FOR SPINAL INJURIES.
TO HELP WITH MUSCLE SPASMS. DON'T EVER TAKE IT! IT INCREASES BLOOD FLOW TO THE MUSCLES
BY DILATING YOUR BLOOD VESSELS. NOT A SMART MOVE! MY BLOOD PRESSURE CRASHED! I THOUGHT
I WAS GOING TO DIE! THERE IS SO MUCH MORE I COULD SAY, OR ASK. I'M JUST SO EXCITED
TO FIND A SITE LIKE THIS! I WAS BEGINNING TO FEEL SO ALONE. IF ANYONE WANTS TO SHARE
EXPERIENCES, PLEASE E-MAIL ME!
name: Pamela Flossic, , RN, BSN
from: California
email:
pbfrn@aol.com
location: My daughter has hemangioma in left scapula. It takes up
90% of scapula
Her hemangioma was diagnosed after she feel and broke her shoulder.
We were initially working with a diagnosis of Ewing Sarcoma, but after 2 biopsies
the diagnosis came back as a large congenital hemangioma tumor in her left scapula,
thank God it was not canser. She had major surgery to try to remove the tumor, but
the scapula bone was so fragile that it fractured during surgery and continues to
fracture, to this day, with any little trauma to that area. After the unsuccessful
surgery that included bone graft from her hip to the shoulder, she was placed on
very high doses of Interferon A to try to reduce the hemangioma. All that treatment
did was cause her to have many side effects similar to chemotherapy. She suffers
from chronic pain because the hemangioma causes her scapula to be very fragile and
breaks easily. Her shoulder also dislocates easily because of the location of the
hemangioma in her scapula. It has been @ 10 years since discovery of the hemagioma.
She is now a senior in high school and is doing as well as can be expected with this
chronic problem. She will have this chronic pain and problem the rest of her life,
but she has learned how to deal with it.Thanks for this website. this is the first
time we have been able to find a site that we can share this information.
name:
Tom Miller
from: Canada
email: tmiller@diacon.com
location: right facial
hemisphere
Distant cousin; juvenile female (14yo) with extensive congenital PWS;
child is resident of Ukraine; history of several botched treatment attempts involving
everything from skin grafts to corrosive "lotions". My interest: arranging
evaluation & treatment in Canada.
name: Robyn
from: Australia
email:
acreageproperties@hotmail.com
location: Between side and to edge of spine
Born May this year it was suspected Katie had 'NF'. The Doctors here advise that
this condition is considered relivant to the growth, the specialists first fear was
that the growth [raised approx. 3/4"]may have attached itself to her spine.
Fortunately this is not the case, however, she suffers from a heart condition and
will soon have open heart surgery. Apparently due to the size of the growth and
the amount of blood required by the growth her little heart is suffering.
name:
Monica Baldzikowski
from: CA
email: mbaldzikowski@readingprograms.org
location:
Eyelid- upper, outer left lid
We first noticed Anna's hemangioma when she was
2 weeks old. She is now 3 and a half months old, and the hemangioma is about half
an inch in diameter, and a bit swollen.Our opthamologist tells us that her vision
is okay, but that he will reevaluate her in 6 weeks. Our dermatologist tried one
laser treatment, noticed that it is getting thicker, and recommended prednisone.We
are terribly concerned about putting Anna on steroids.I would greatly appreaciate
any feedback. I am pretty emotionally distraught right now.Thanks.
name: Denise
Monsma
from: Montana
email: bridenmonsma@mcn.net
location: Upper lip hemangioma
My
son has an upper lip hemangioma which is not involuting but actually enlarging. It
is now beginning to affect his teeth alignment. He will soon be three so we are becoming
concerned about teasing he may receive as he enters pre-school and other activities.
He is currently seeing a plastic surgeon who recommends a watchful waiting approach.
name:
Shani Pierre
from: Ohio
email: Shani_Smith@Yahoo.com
location: My Vasuclar
Malformation/deep lesion is in my right leg extending from the knee cap to mid thigh.
:
I am a 27yr. old mother of 3, and my malformation was mis-diagnosed as a hemangioma
for years. It first appeared when I was in the second grade. I had a lot of pain
but the doctors didn't know what was wrong with me and for 2 1/2 years they told
my mother that I was faking it. To make a long story short, I have been in pain
for many years. The pain is so bad that I tend to use my left leg more and this has
caused the calf muscle in my right leg to be drastically smaller than in my left.
For this reason, I don't wear skirts, because I really get tired of people pointing.
Anyway within the past 3 years, my malformation has begun to grow. This scares me
because the pain has just gotten worse. I've had procedures done to reduce the size
of the enlarged blood vessel, and they have succeeded. But, my last procedure didn't
help at all. I can't have it removed because 50% of my muscle would have to come
with it. It's tangled and wrapped in the muscle. For a long time! I felt like I
was the only one in the world with this problem. I have been blessed to find this
site on the internet and see that there are people with my same problem who are willing
to give you some type of support. This has been an uphill battle for me mentally
and physically. I just pray that the growth can be controlled and I can some day
be cured of this terrible pain.
name: Kevin & Robyn Kuchta
from: New
York
email: kkuch@earthlink.net
location: Venous Malformation On Right Leg-
All I can say is thanks for your newsletter.
Three years ago my wife and I wanted
answers to e treatment options for our daughter Katie who had (so we thought) a hemangioma
on her shin.We went on the recommondation of our primary care physician to a pediatric
dermatologist. We were made to feel almost silly for bringing our daughter in. "
Monitor it" was what we were told.. right after that visit I went to your website
where I was referred to Linda Brodsky as someone who might be able to provide some
definitive answers. Well I'm embarrassed to say that we waited two more years before
we finally made the call to Dr. Brodsky (who wants to think that these things won't
go away) Well..long story short my daughter was mis-diagnosed. She has a veneous
malformation which at this point does not look to be too deep. Katie will go for
an MRI next month. And we are hoping for the best. Now that we know she must have
"her berries" removed, Both my wife and I are looking for information on
children who have had malformations on legs...arms etc...and how their treatment
went. Finally I just want to tell parents who may be reading this....trust your gut
feeling and keep pushing...my wife and I went through our primary care physician,
and one specialist who both told us to wait it out...they were wrong!
name:
Greg & Leona Collett
from: Canada
email: gcollett@nb.sympatico.ca
location:
1mm below vocal cords in the airway
Our daughter Sarah has developed an hemangioma
in here airway just below her vocal cords. Its taking up about 50% of her airway.
She is currently undergoing steroid treatment and showing signs of inprovement but
where she's only 3 months old the steroids will have to be stopped. The doctors are
going to inject the hemangioma directly to speed up the process with lazer surgery
as a last resort.
name: Alison Renz
from: St. Louis, MO
email: renzali@gw.kirkwood.k12.mo.us
location:
Right temple and chest
My daughter,now two years old, was born six weeks prematurely.
The day after her two month appointment with the pediatrician she developed a large
"bump" on her right temple. We were referred to numerous doctors, including
a pediatric dermotology specialist at St. Louis Children's Hospital who said the
hemangioma on her temple was called a deep hemangioma. The small one on her chest
is red and raised. She went through an MRI (to see if the deep hemangioma had affected
her brain, eye sight, or hearing), ultrasounds, and bronchioscopes (to see if she
had any internal hemangiomas). All checked out well--no major problems. The specialist
told us that the hemangiomas should disappear by the time she reached the age of
5. The temple hemangioma is now gone--it decreased in size rapidly after she reached
the age of one. The hemangioma on her chest has not changed in size, but we are
not worried. Her specialist said she could have it removed when she turned six if
it did not go away before then. Have faith, listen to the doctors, and don't be
afraid to have them checked out early. If you don't like what the first doctor says,
don't be afaid to seek out a second opinion.
name: Dawn Swartz
from: NC,
USA
email: dawnswartz@hotmail.com
location: face, neck, ear, scalp, back, buttock,
leg
My 2 year old daughter has had some successful laser surgeries at Duke University,
but my husband's employer has switched insurance companies. The new insurance company,
is denying coverage. We are currently in the middle of the appeal process. Dr. Burton
feels she is probably about halfway through her treatments. Her face, neck, and back
have had quite a bit of lightening, but her scalp and leg are being more stubborn.
Also, just had a new baby, and she has a stork bite (V-shaped on her forehead and
a cluster of small "strawberries" on the back of her neck)!
name:
Kristin Wall
from: Washington State
email: jwalldc@televar.com
location:
Lower left arm and palm of hand
Our daughter, Emily, was born (4/16/95) with an
AVM (arterio venous malformation) on the palm of her left hand. She was misdiagnosed
for her first 2 1/2 years as a "cavernous hemangioma". We were not concerned
as it didn't seem painful and didn't seem to be a problem. When she was a little
over 2 years old, we were in the swimming pool and I looked down and literally saw
a pool of blood. I knew that it was hemorhaging. . .to make a long story short,
we ended up at Children's Hospital in Seattle and eventually with Dr. Waner and Dr.
Nicolas in Arkansas after 1 1/2 long years of searching and not knowing where to
turn. Dr. Waner as well as Dr. Nicolas were the best. AVM was completely surgically
removed and this Sept. we celebrated our two year anniversary since the removal and
everything is going really well. I can't say enough about Arkansas Children's Hospital.
. .If we can help eliminate anyone's worries or use our experience to help anyone
avoid the stress ! we went through, we are here to help. Kristin Wall
name:
Deana
from: Pittsburgh, Pennsylvania
email: DeanaD617@aol.com
location:
On the left side of my 4-month-old cousin's face
My cousins are twin girls.
They were born 6 weeks premature. Only one developed a hemangioma; approximately
3 weeks after birth. It started as a small mark below her left ear, and began growing.
At one point it looked like a swollen lymph node, my aunt called the doctor and
it was diagnosed as an ear infection and she was prescribed medication. After three
days, and no change, my aunt took her to a specialist. That's when she was diagnosed
with the hemangioma. She was about 5 weeks old. It began to grow extremely aggressively.
She was put on prednizone. As she has gained weight they have had to increase the
dosage. Today was another doctor's visit. My aunt and uncle were told that it will
be atleast a year before she will be taken off her medication. In the meantime,
no one is allowed around her because she does not have an immune system. This is
very upsetting, and frustration. My aunt has not left the apartment since she was
bedridden prior to delivery, except for doctor's appointments. I am writing for information.
Can anyone offer information to what lies ahead? Is this life threatening? They
did a scope of her esophagus to see if it was spreading in her throat, if it was
she would have needed to get a trachea tube so she could breath--that was the only
good news we have gotten lately(September9). Will they need to continue to check
her throat? Concerned cousin looking for answers...
name: Mark Cutler
from:
North Carolina
email: m_cutler@hotmail.com
location: Under Arm
Discovered
lump under backside of my daughters arm @ age 2 (1997). Went through numerous medical
tests (biopsies, ultrasound, MRI) which finally resulted in exploratory surgery.
The outcome of exploratory was identified as a cavernous hemangioma tumor. The
tumor has grown in size proportion to her physical growth. The growth is now (2000)
double humped in shape with length 2 ¼ , width 1 ¾ and height ¾-1 and contains large
purple vessels showing through skin and does not have any wine or capillary vessel
appearance either externally or internally. We have not encountered any growth deformities
of arm due to possible restriction or increase of blood flow. The major vessels
of arm are intertwined within hemangioma. I read previously in support group forum
of a family with a similar identified vascular lump under arm of their child and
cannot locate same message. Request response(s) from original author and/or other
families with similar experiences.
name: Sharon Haylett
from: Idaho
email:
shc5808@icqmail.net
location: On the crown of my head
I was born with three,
the main one the crown of my head The second under my right arm, the third right
side of my leg.The Doctor took radition to remove them but I still have the scar
from the main one. It is a bald spot about the size of a dime or quarter. It hasn't
given me any trouble up until now. I seem to be forming a crusty scab, and it is
getting red. Other then that I have had on problems. I am 54 years old.
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