name: Janice
email:snyder@do.prescott.k12.az.us
I'm 39 years old with a hemangioma on my left index finger. When I was
a baby, the doctors treated it with dry ice. I didn't see a doctor again for my
hemangioma until I was around 10 years old. I remember the doctor telling my
mother there was nothing that could be done. After that, I just lived with it.
I know little about my hemangioma; in fact, I didn't even know the proper name
of it until I was 27 years old (I always referred to it as a "growth"). And
since it is in an inconspicuous place, I don't even think about it very often.
At the age of 27, however, I began having what I refer to as "attacks." The
hemangioma swells up and I cannot straighten my finger. I must apply continuous
pressure until there is relief, sometimes up to several days later. The finger
is then swollen and sore for several days. Overuse or a blow to the finger can
bring this on, as can a rise in my blood pressure. My mother heard a radio
program at that time about hemangioma!
s. It was then that I discovere
d that my "growth" had a name and that there may be treatment on the horizon.
Since then, I have seen two dermatologists. The first feared that I would lose
the use of my finger; years later, the second dermatologist said he may be able
to treat it with laser in the future
name: Susan
email:skwilkerson@mindspring.com
comment: I was diagnosed with a hemangioma on my liver several years ago. I
have had 2 abdominal ultrasounds showing this with no problems. Last week, I
had to have another abdominal ultrasound and it was there again. Today, the
doctor called me and told me that he wants me to have a tagged nuclear medicine
red blood cell scan because it has apparently gotten bigger. How much bigger I
do not know. I am a little scared right now about this. The only thing that I
know is that I will be radioactive for 2 and 1/2 days after this test. I would
appreciate any information on liver hemangiomas! Thanks!
name: Patty
email: sblaisdell@mindspring.com
comment: Our 15 year old daughter, Elaine, has what has been diagnosed as a
cavernous hemangioma on her upper right lip. Hers is unusual in that it did not
appear until she was about 5 years old. It grew rapidly. At 11 years of age she
had laser surgery at University of Pittsburgh. It helpded for a time, but the
remaining vessels swelled more.We are currently re-seeking medical help at Johns
Hopkins.Elaine has had a difficult time dealing with her deformity, especially
as a teenager.We would be interested in hearing from any teens with hemangiomas
or those who have coped with similar problems through their teen years.Thanks.
name: Lisa L. Dollard
email: LLaGrasta@Classic.msn.com
comment: My Daughters name is Hannah Grace. She has four masses of Hemangioma on
the left side of her face. Hannah is now having lazer treatment once a month. We
live in Naples , Fl. and travel to Manhattan , N.Y. to see Dr. Roy Geronimus. He
has been our most positive force yet. Her reddish Marks are almost gone but,
now we have the large masses . One on her Peroted gland and on the cheek, in the
orbit of the eye(which thankfully has not cause glaucoma) and one on her neck.
As of today 12/4/97 we await a phone call from Dr. Milton Waner, for I have sent
him Hannah's MRI films And Med. reports. I could not have done all this if it
wasn't for Hemangioma Hope, Cindi Dougan. Thank you!
name: Larry Saunders
email: saunders@fuse.net
comment: My 4 month old son, Chace, has a 1 cm and growing
strawberry hemangioma on his forehead near his
hair line. Our doctor says wait and see. I was
wondering if I should be doing anything else.
name: Leanne
email: rumery@iserv.net
comment: My 5 week old has been diagnosed with a cavernous hemangioma with a
small strawberry on top on her right cheek close to eye and nose. Our
pediatrician said take wait and see approach but we are seeing a dermatologist
on the 16th for another opinion. I need info on best treatments this early on
and on the use of prednisone--is it safe? are there side affects? Please e-mail
any info asap. Thank you.
name: DEBI B.
email: BREZAY1193@AOL.COM
comment: OUR PROBLEMS STARTED WITH OUR DAUGHTER BRITTANY WHEN SHE WAS A MONTH
OLD. SHE WAS BORN PREMATURELY. SHE HAS THREE BIRTHMARKS. A CAVERNOUS
HEMANGIOMA ON HER LEFT SHOULDER, A STRAWBERRY HAMANGIOMA ON HER HEAD AND A
PORTWINE STAIN ON HER BACK. THE CAVERNOUS HEMANGIOMA ON HER SHOULDER HAS
RUPTURED SPONTANEOUSLY SQUIRTING BLOOD THREE FEET INTO THE AIR. SHE HAS BEEN IN
THE EMERGENCY A HALF DOZEN OF TIMES. SHE WAS ON PREDIZONE FOR ONE YEAR, TAKING
THREE TEASPOONS EVERYOTHER DAY. WHEN SHE STOPPED TAKING IT, THE HEMANGIOMA GREW
BACK. FINALLY, AFTER PRAYING AND A LOT OF RESEARCH WE FIND THE SHRINERS BURN
INSTITUTE IN GALVESTON TEXAS. THEY HAVE PERFORMED THREE LAZER SURGERIES SO FAR
AND WILL NEED TO DO ABOUT SIX MORE. SINCE SURGERY BRITTANY HAS NOT HAD A
BLEEDING EPISODE, THANK GOD. THE SHRINERS HAVE ASSUMED ALL COSTS INVOLVED AND
EVEN PAY FOR THE AIRLINE TICKETS TO TEXAS. IF ANYONE OUT THERE IS EXPERIENCING
FINANCIAL DIFFICULTIES AND NEEDS HELP, CONTACT YOUR LOCAL S!
HRINERS AND LET THEM KNOW THAT Y
OU NEED HELP AND THAT THERE IS HELP AVAILABLE FOR FREE IN TEXAS. OF COURSE YOU
WILL NEED TO GET "EVERY" COPY OF MEDICAL DOCUMENTATION ON YOUR CHILD TO PROVIDE
TO THE SHRINERS. THEY WILL REVIEW YOUR CASE, AND DETERMINE WHETHER OR NOT THEY
COULD HELP YOUR FAMILY. IT IS NOT VERY WELL KNOWN THAT THE SHRINERS HOSPITAL IN
GALVESTON TEXAS IS DOING LAZER SURGERIES ON HEMANGIOMAS AND PORTWINE STAINS.
THEY WILL TREAT YOUR CHILD UNTIL THEY TURN 21 YEARS OF AGE. THEY ARE WONDERFUL
WITH BRITTANY AND THEY SPECIALIZE IN TAKING CARE OF OUR CHILDREN. THEY HAVE
LITERALLY STEPPED IN AND SAVED OUR DAUGHTERS LIFE. WITHOUT SURGERY, BRITTANY
COULD HAVE BLED TO DEATH. DON'T HESITATE TO CONTACT YOUR LOCAL SHRINERS--THEY
LOVE TO HELP OUR KIDS. GOD BLESS EACH AND EVERYONE OF YOU OUT THERE, YOU ARE
NOT ALONE IN YOUR STRUGGLES. I HOPE THIS INFORMATION MAY HELP SOMEONE IN NEED.
MERRY CHRISTMAS
name: Cathy Phares
email: CP7656@aol.com
My daughter 8 has undergone her 3rd plastic surgery for cavernous
hemangioma that covered her top lip and protruded out 1 inch. We had been
through 5 years of the stares and teasing before I demanded some help. There is
a wonderful surgeon in Birmingham, AL at Children's Hospital who is a Pediatric
Plastic surgeon who specializes in Lips and cleft palates only. We felt so
lucky to have someone like this in our own hometown. The results are remarkable
and we have been thrilled.
name: Soleil Archila
email: sol@mrpost.com
I am a 19 year old girl from Guatemala and I have a Hemangioma that
covers my whole right leg, from the toe to my hip and it goes into my urinary
bladder.
I was a premature baby, born when I was 8 months old.
I had various laser surgeries when I was little but it was a slow treatment
because my Hemangioma is too big.
I've had to go through a lot of suffering and there was one time when I was
bleeding from my bladder and I was dying form anemia because I was losing a lot
of blood. I even had a hemoglobin of 4.
I would really like to know if there are any new treatments for Hemangiomas and
especially for big ones like mine.
I will appreciate it if anyone can write to me because sometimes I get sad and
discouraged.
name: Billy Sharp
email: WAS4077@aol.com
Hello I am 37 years with a massive cavernous hemangioma in the roof of
my mouth reaching all the way to the outside of my left ear, among other places
below my left chin and down the side of my throat. About the age of eight I was
seen by about every doctor that had anything to do with the face and neck in the
town where I lived and like many of the letters I've read here, I was also told
it would probably go away as I grew older. Since then they have taken out two
large masses below my left ear and down the side of my neck, the roof of my
mouth has swolen so large that it touches the back of my tongue and leaves only
a small opening at the back of my throat which the doctors say cannot be removed
by surgery. They say I should respond favorably to other forms of treatment I am
not writing this letter to scare anyone of you but to tell my story of what
started out looking like a bruse on my ear and in the roof of my mouth.
Unforuately I dont have insurance and fil!
ing for disabilty because of it,
if anybody knows of a doctor that specializes in the treatment of hemangiomas
that might be willing to see me please get in touch. Thank You
name: Gary Curran
email: GaCu1213@aol.com
When my son Ryan was about 4 weeks old we noticed a bump inside his
upper lid. The pediatrcian said it was a cavernous hemangioma. We took Ryan to a
pediatric plastic surgeon, he put him on prednisone for 2 months. In the first
week it grew from the size of a pea to quarter-size. It pushed his lip out past
his nose. The drugs seemed to halt the growth after a few weeks. He is now 10
months and it is still a noticable lump. Since he has grown and the hemangioma
has not, it is getting smaller relative to his face. Some days it looks worse
than others. Every doctor we have seen has had a diference of opinion, we are
looking for a doctor that has experience in hemangioma treatment in the
northeast(NJ,NY,CONN.).Thank you Gary
name: Rejena Girton
email: landing@sunlink.net
Hi. My son, Timothy was born June 8 1997. He has a port wine stain on
his face.
He has had 2 laser treatments so far, with another slated for Jan 23rd. I have
started
a small journal regarding his story, treatments, and my general feelings about
the pws.
The journal is located on our web page in Tim's page (click on Piglet). I hope
that our
experiences help others who are dealing with this sometimes tramatic
circumstance.
I would love to talk with anyone.
Sincerely,
Rejena Girton
http://www.sunlink.net/~landing/
name: Rebecca Rooney
email: Tampa General Hosptial PICU
Our daughter has been diagnosed with Kassabach Mer
rit Syndrome which is a cavernous hemangioma w/
thrombocytopenia. She is 8 mo. old and has been
in the hospital more than home for the last four
months. This lesion bleeds internally causing
serious platelit destruction. She has had
numerous transfusions of platelits, fresh frozen
plazma, and cryo. This helps temporarily. She
has tried predisone briefly then was started on
alpha-interferon. She has been on interferon for
two months now w/ not much responce. The doctors
are talking about putting her back on steriods
and possibly embolizing this lesion and injecting
steriods directly into it. Her hemangioma is on
her neck, shoulder back and chest and causes her
airway to be compromized. She has been intubated
3x's for this.The doctors here are wonderful but
as a mother I am frustrated.
If anyone has been thru this I would greatly
appreciate your feedback. I do not have an
E-Mail address but I am at Tampa General
Hospital, Tampa, FL in the PICU most of the
time and I am constantly using this library.
If you respond I will Find it.