Welcome to Birthmarks and Hemangiomas InterNETwork Support Group Page 4

name: Peggy Jensen
email: djensen@micror&d.com
Hi, Our 4 yr old son was diagnosed with a vascular hemangioma last year. We were told he would "out-grow " it by the time he is 5 or 6. So far it shows no sign of improvement. It is located on the underside of his left arm and he is constantly bumping it or getting grabbed by unknowing people. He does not use it as much as he used to because of this. When he runs it hangs at his side. I would like any information that is available. Thanks

name: Cathy Davies
email: c.s.davies@btinternet.com
My daughter has a hemangioma on her cheek and one on her chest, they appeared when she was about 7 weeks old. My doctor said to keep an eye on them and that they will probably just go away. I know nothing at all about hemangiomas but I have just done a search on the computer about them and what little I have read sounds scary. The doctors say not to worry. What sort of things should I know about hemangiomas? Is it something I should worry about? My daughter is now 6 months old and the hemangioma on her cheek has not grown but there are little spidery veins spreading out from it, but asying this, it is very small about the size of a bird seed. I would appreciate any info or advice, thanks.

name: Melissa Kapper
email: Heymo4@aol.com
My daughter (Kaitlin) is 20 month's old and has a hemangioma above her right eye. It's a little larger than the size of a nickel and sticks out about a half of an inch. She is very friendly and most people are really friendly to her. Of course she gets stares and I can almost read people's minds and what they are thinking. She calls it her bee bee(boo boo) and is starting to pull at it quite a bit. Our main concern is it hurting her great personality and self esteem when she gets older. We are contemplating removal and we hope to find a lot of answers on this web site. So far what I have found here is very informative and I hope it will lead us to a decision and to find the best doctor and way to have the surgery done. Thanks so much for the web site because it is answering a lot of our questions.

name: Carole Brackett
email: Mcbrack @ aol.com
I have a 4 year old son who was born with a hemangioma on his right shoulder/back area. It's about the size of a 1/2 dollar and sticks out about 1/3 of an inch and is really dark red. The doctors say to leave it alone and it will involute and disappear by the time he's about 10 years old. It looks a little bit flatter not than it did when he was born, but it doesn't look any smaller to me. It's hard to imagine it "going away" by itself. Has anyone had the experience of a hemangioma "going away" by age 10 or so with no treatment? Is there a scar? I don't want people to stare and make fun of him...how do you handle that? I don't want him to have a complex about it. Any comments would be appreciated!!

name: Angel Hood
email: im_n_angel1977@yahoo.com
When our daughter was born in July of 1997, she was perfectly clear of any birthmarks. When I took her to the Pediatrician for her 2 month check up, I mentioned to the Dr. about a small puffy spot between her right eye and the corner of her nose. The Dr. assured me that it was nothing. The spot gradually grew bigger and I noticed that the Doctor should examine it again. The following day, the Dr. examined it and scheduled a CT Scan. The Scan showed no signs of severity, but the Dr. referred us to a reconstructive plastic surgeon in Lexington, Kentucky. Our daughter Alexis is 9 months now and the diagnosis was a Strawberry Hemangioma. The size of her hemangioma is about that of a quarter and has the color of a red spider vein look. I am getting very concerned, because it seems to be affecting her vision. It is raised about a half inch and seems to be getting bigger. The Dr. told me that most go away at the age of 1. My mother had a Strawberry on her forehead and it went away at the age o f 1. But, this worries me, because many people are so rude and ask if Alexis has fallen and bruised her nose. I usually reply, "No, it is her beauty birthmark!" There has not been any medical procedures done yet, because they say it is better to wait because of the location of the hemangioma. The Doctor says wait and it will go away. It still frustrates me knowing that her spot is getting bigger and all I can do is wait.

name: DAWN BRYANT
email: DBRYANT@HanoverDirect.com
My daughter Sierra was born four months premature. She weighed 1pound and 8 ounces. Shortly after we discovered a red dot on the left side of her nose. I was told not to worry about it while she was in the hospital. After spending 2 months in the hospital, she was released and the dot started getting larger. It grew so large that it was pressing her nose down and I was afraid that it was going to prevent her from breathing. So at 2 1/2 months of age she started getting dry ice treatments. After she had two treatments, I couldn't stand to have her hurt anymore. But the treatments did stop the hemangiomas from growing. She is now 5 years old and the hemangioma seems to be getting smaller. But as she gets bigger it looks smaller. I've been to 2 pediatric surgeons and they both say that I should leave it alone because they can feel a hole under it that it will shrink into. Afer 5 years, I don't see it anymore but strangers still stare at her and that PISSES m! e off!!! Thank You for this o ppurtunity to speak my peace. There really isn't a lot of info out there so I would love to hear from others going through the same situation. My e-mail address is DBRYANT@HanoverDirect.com.

name: suzy lieberman
email: suzyl@aol.com
Im 36 and have hemangioma on my liver but i have a lot of pain from it.is there any one that knows anything about this, that can help me understand it better.thanks

name: Kim Thompson
email: kthompson@dgb.net
Our 3 month old daughter has a hemangioma on her nose. One doctor wants to treat it with laser and the other wants to treat it by injecting steroids. I have heard of treating them with steroids and laser but never by one or the other. Has anyone had any luck with just laser?

name: Julie Black
email: Alapsu@aol.com
My 10 week old daughter has a hemangioma on her upper lip. Most of the hemangioma appears to be on the inside of her lip. As with many of the postings I have read, the Doctor's advice was to let it run its course unless she somehow tramatized it once teething starts.Does anyone out there have any info on oral hemangiomas?

name: Anne Marie Chateauneuf
email: mmcamc@aol.com
My daughter, Emily was born July 8, 1998. She has facial hemangiomas (lower lip and side of her face) as well as hemangiomas in her trachea. She has already had two laser surgeries on her trachea because the growth of the hemangiomas was interfering with her breathing. The surgeries were successful and she no longer has any problems breathing. She was also taking oral prednisone to contain the growth of the hemangiomas. We found the prednisone very helpful but have now weaned her off the medication now that her condition is not life threatening. Our next decision is what to do about the hemangiomas on her lower lip and cheek. We are currently investigating whether to consider surgery now or in a few years. Our other major concern is the emotion impact of the hemangiomas. She is almost 2 years old and is becoming aware that people stare at her. She points to her lip and says "Mommy, Emily's birthmark"

name: Danielle Rheaume
email: davmarw106@aol.com
I was born in 1976 in Seattle Washington, and at that time the doctors discovered a small discoloration of the bottom of my left foot. They informed my parents that I had a cavernous hemangioma and that it should dissapear by the time I turned 5 years old. Well, 5 years old came and went and I still, to this day have the hemangioma on my left foot. I suffer from phlebitis, gout, arthritis, errosion of tissues, and errosion of my bones in my foot. Often times walking is quite painful, and on occasion impossible. However, my life in many other ways is quite normal and healthy, and yet I would like to have something happen in a positive direction concerning my foot. I have been told two different things from doctors. One doctor said that I should never ever let anyone lay a hand on my foot and that I should refuse surgery. Another one said that I needed to have partial amputation of my foot done and a group of 6 attending surgeons at the amputation. I am at a loss for words... lose half my foo t? I cannot imagine. I would like to hear from other people about their experiences as well as their advice/recommendations. I would really appreciate the company. I have always felt very lonely with my handicap, -in the sense that I know no one else with a similar problem. So please feel free to e-mail me at Davmarw106@aol.com. My name is Danielle and i would love to hear from you!

name: Kelli Hopkins
email: mhkhmemj@worldnet.att.net
My 6 mth old daughter was born with what we thought was a cavernous hemangioma on her foot. We just found that it is a complex lymphangioma. This is all new to me and I would like to find out more info on this. I don't want to sit back and wait if we should be doing something for it. My concern is if it hurts her or not. Also, when she begins to walk I am concerned about complication with that. It covers the majority of her foot and part of her ankle. There is a large knot on her ankle. We were told this is where blood and lymph fluid has puddled. It seems to swell a lot and will go back down. It has never been the same size as her other foot. If anyone can help me please email me. Thanks so much!

name: Dionne Durant
email: softnotes1920@hotmail.com
I have a few hemangiomas....on my right hand, thigh, leg and foot. For years doctors have been telling me that there was nothing that could be done. Until now i felt really alone. If anyone could help me with contacting specialists please e-mail me and let me know...thanks!

name: Pam
email: Poptarts3@aol.com
My 7 week old daughter has what the physician has called a caverous hemangioma on her right knee. We didn't even notice it until she was about 3 days old. At first it looked like a coaster-sized bruise. Over the last few weeks it has become bright red in color. Our physician seems to think it will fade over time. We hope that it will, but right now it just seems so large on her tiny body that I don't see how it can. I am debating over getting a second opinion. My big fear is that this is something more than what the physician thinks it is. I have a cafe au lait on my arm and I know how cruel children and even some adults can be. My birthmark is barely noticeable but it caused me great embarrassment as a child. I don't even notice it now, but I would like to spare my own child from the constant remarks of others if I can. Please feel free to email me if you'd like.

name: Sherri McDaniel
email: shermcd@frmail.frco.com
We have a 10 week old daughter who has a hemangioma growing on her right eyelid. It has started to cause astigmatism in her right eye. We are patching her other eye to avoid amblyopia and are looking at treatment options for the tumor itself. We'd like to hear from anyone with experience with hemangiomas near the eye and their vision effects. We are concerned about treatment side effects in such a young child.

name: Bettie Bowen
email: chweeks@merlin.ebicom.net
I an the grandmother. My daughter had her second baby 12/18/97. At 3 weeks we found a small swollen place on the right cheek right in frount of the ear. The docter in our small town sent us to a specilist in Jackson,Ms. He told us right off that it was a hemangioma of the parotid gland ,and that nothing could be done,because if cut she would be parlizes on that side of the face, and sinse it is a mass of blood she would bleed to death in a matter of minutes. All we can do is wait. That it should stop growing by 6 months, and be gone by 4-5 yrs. of age. Her ear cannal is already closed. He can not tell us what other damage it will do, we will just have to WAIT. That is hard. People think that we should do more, but what else can we do?People are starting to stare when we walk by. That is not the problem , we just want to know if we are doing all that can be done for her.Please help us with the hearbreak we are going thru. I know we could be so much wrose off. By readi! ng all the letters I have read t onight. We have so much to thank God for.

name: Laura
email: McClellandl@roberts.edu
I am 44 years old and have been told I have a Hemangioma in my right calf muscle. It causes me to limp when I walk and occasionally wakes me at night with what feels like leg cramps. My Dr. has offered to remove it with surgery. This would include removing a portion of my muscle also. Has anyone out there ever encountered any leg hemangiomas and how have they progressed or been handled? If you had surgery were ther any complications?

name: louise mccarthy
email: louise.mccarthy@anixter.com
My daughter Amber is 6 months old, she has a large vascular Hemangiomas in the centre of her forehead. My doctors said he would not refer me to a consultant as it would disappear. But it is getting bigger every day. She also has a double one on her back. We found a consultant ourselves and went to see him last week. He said it was too big to treat with laser but a plastic surgeon he knows would perform the operation. It would leave a scar but I was prepared for that . I am currently waiting to see if my private health insurance will cover us. We live in the UK. Has anyone had experience of treatments in the UK?. Also, I have read that if there are more than 3 appearing on the body there could be internal problems, what does this mean?.

name: Nora Wood
email: woodna@pfizer.com
My daughter is almost 7. She was born with a faint red spot on her upper lip. Within 6 weeks it grew to the size of a large grape. It stayed that way until she was about 2 and then it started to fade from a dark-deep red to a light pink. History of surgeries: At age 4 she was operated on in Boston. The operation was to remove left over tissue in the tumor. The doctor thought the hemangioma's blood vessels had receded enough to remove the tissue to make it flatter. the operaion failed and it immediately returned to a large grape-sized dark red tumor. Next, at age 6 we went to see Dr. Edwin Williams in Albany New York. He performed the same type of surgery. This time it only stayed dark red for about a month and is a little flatter and light pink again. She has two scars - one across the top left side of her lip and the other up and down her lip (from the bottom of her nose to the top of her lip). We are now waiting to hear from Dr. Williams regarding the next step. He was thinking it would be laser surgery to smooth it over, but from my experience, it looks to me like more tissue needs to be removed...uuuggghhhhh. The emotional ups and downs have been hard, however, a good prayer life, family and friend support and getting my daughter networked with the community children at a very early age has helped her have many friends and also talking about it (not too much), but being open with her about it I believe has helped. She is adjusted to it, but will say from time to time (I wish my bump was gone; I feel different, etc.).

name: Pam Allmon
email: allmonpp@olywa.net
Our son was born six weeks early and spent the first three weeks of his life in the NICU. Shortly after his discharge, we noticed a small bump above his right eye. We took him to his pediatrician who referred us to an opthamologist. He was diagnosed as having a hemangioma. In the 12 days since his diagnosis, it has tripled in size and turned a bluish red color. We would greatly appreciate hearing from those of you who have gone through courses of treatment and the successes and failures. Thank you.

name: louise McCarthy
email: Louise.mccarthy@anixter.com
Our daughter Amber is now 6 months old. When she was 3 weeks old a red spot appeared in the centre of her forehead. It began to grow quickly. Now it is 1 ich long. It is raised and full of blood. Our doctor did not recommend treatment as it should disappear by the time she is 7 years old. He called it a Strawberry Nevus, but when I read about strawberry nevus on the internet these did not tend to disappear. I read about Hemangioma's and your stories and they seem to match our story. We contacted a private doctor he said that it was too large for laser treatment but would be ok for plastic surgery but would leave a scar. We are unsure what to do now?. Has anyone had a similar experience?. Do they disappear?. By what age?. Does plastic surgery work without complications?. Thank you Louise

name: Alicia and Kevin Ringham
email: aringham@erols.com
5-23-98 Hello everyone! Our 3rd child, Emily, has an interesting story. She has a strawberry hemangioma on her back (has grown to be about the size of a pencil eraser) that looks like it is starting to involute-it showed up almost immediately after birth. She has a cavernous hemangioma on her ankle that has not shown signs of getting larger-we noticed it in the hospital. She has another small strawberry hemangioma on her right eyelid near her eyelashes-it is still pretty flat, but is growing a little. Now the 'interesting' part: she has a hemangioma and a lymphangioma (presumably--it was diagnosed from MRI) BEHIND her right eyeball in the socket. It causes her eye to protrude so they actually got a preliminary diagnosis from a prenatal ultrasound. The docs don't think her eyesight has been damaged yet and are hoping to come up with a plan of action soon (she is just now 3 months old). They have stitched her eyelid partially closed to protect her cornea from getting scratched (when she cried, her eye was pus hed out of the socket quite a bit from the blood rushing into the extra vessels behind the eyeball) and to give them more time to come up with a treatment. Steroids, laser, etc is difficult and risky because of the location and sensitivity of the eye. As far as the doctors can tell us, this is the only case they have ever seen like this (especially since they were there before birth). We would like to hear if anyone else has had similar experiences or hemans or lymphans in the same location. Thanks!

name: Diane Gillit
email: Gjoy121788@aol.com
My daughter Amanda is 12 years old. She was born with a hemangioma(?) which encompasses most of the right side of her lower lip producing a bluish discoloration on the outside and extensive blood vessels visible on the inside. Our family doctor assured us this would fade/involute over time. At age five we took her to a plastic surgeon who wished to monitor her but take no action due to the involvement. We eventually had ten Candela Laser treatments which were expensive but did not permanently change the growth. We have also tried steriod injections. A MRI last year showed no invasiveness beyond the jawbone but the plastic surgeon is concerned that it may grow into her brain later. Has anyone had a similar hemangioma (or the more I read I think this is a venous anomalie instead)which has been successfully treated? The only surgical solution we have been offered is to excise the entire lip down to the jawbone which seems extreme. Even with this "bruised lip" she is a very happy and popular chi ld. The solutions we have been offered at present seem worse than the problem.

name: susan n
email: ssnic@aol.com
i'm a 39 yr.old who has a cavernous hemangioma since birth. been operated on twice and each time it grew back more. it is on my left side of my face and it includes my neck and head. it is on the inside and it includes my paratoid gland. it has caused constant headaches and facial pain. I have stopped going to doctors because no one can give me a straight answer, my last surgery has been 5 yrs ago and it has grown back now to include my temporal muscle in my head. Any doctors in the Phila area who treats this would be welcome. So far no one will touch it, it also has been bleeding on the inside causing my face to have small black and blue marks. i had treatment for it but it has come back again.

name: Ronni
email: Texasgal@prodigy.net
My daughter Brittany, who is now ten years old, was born with three hemangiomas, all on the right side of her body. One on her face which is quite large, right below her eye, one on the palm of her right hand and one on her right buttock. All three hemangiomas grew after birth quite a bit. We were told not to get treatment until two years of age, to allow them time to resolve on their own. Unfortunately, the one on her face and buttock spontaneously ulcerated at about 18 months of age, leaving a white scarred area . The hemangiomas on her hand and buttock have since greately flattened and faded, but the one on her face never did flatten out much and still appears to have a deeper component to it. We had two laser treatments done with the pulsed laser to the one on her face, but much to our surprise these left scarring, which was not supposed to happen. So now , the areas, which did not have scarring, now are scarred. I was wondering if anyone else had an experience in which laser treatment left scarring. We are now in a quandry as to what to do next. The doctor now tells us that there is not anything besides major plastic surgery that could attempt to correct these scars, basically he stated it would be a face lift in reverse, which I would never put her through. I was wondering if there were any other specialists in Texas that anyone knew of that were recommended that we could take her to to have her hemangiomas evaluated.

name: Margaret Patane
email: joeandmargaret@bigpond.com
Our daughter Emily is now nearly 6 years old. At about 3years old a bruise with a lump was observed on her chest. After consulting with a paediatrician every 6 months until now, it was decided to surgically remove this lump and another smaller lump in the same area. Three weeks after surgical removal, lumps developed in the same space on her chest, only ten times the original size. She has just had emergency surgery to remove/drain the haematoma, and I am just so scared that this will reappear. Such a relief to read of others' with this problem, would be grateful to hear from anyone, as I don't have much faith in the doctor's opinion on this issue. Thanks.

name: vicki
email: mustang@earthlink.net
I am 43 years of age. I was born with the hemangioma tumor. It was located on my calf. My first surgery was at ten months of age. The tumor returned. The plastic surgeron referred to it as superficial strawberry hemangioma. I had to have more surgery as I grew. The first surgery (ten months of age) my mother had radiation treatment after the surgury. I have had no more radiation. But the tumors have since returned. I was told by the doctors in my home state that no more surgury should be done. In junior high, the tumor had continued growing and moving upward on my leg. Very much pain. Very much varicose veins. My parents took me to Cleveland Clinic. They said I should have no more surgery, but the pain was so bad, and the tumors increased in size. So with much deliberation of my family doctor he performed surgery on my calf and thigh. The tumor consumed much of my muscles. I had those removed as well as vein strippings done. I was told I should never have children due to my condition. I was married, and I now have two wonderful sons... They are tumor free!!!!!!! My pregnancys were difficult. My problem is now that the tumors were never gone but they've continued to grow. Still I need to find a way of proper protocol for the pain. It seems on my last MRA and CT scans that the tumors are not only in calf and thigh but in buttocks and spine as well. I live in WV and even the cardiovascular surgerons don't give me encouragement of treatment or of pain relief. I'm going to my family phy. Monday. I ask him via phone conversation re: cortisone regime because I told him the news of what I've read on internet. He wants me to copy info. from internet of treatment of hemangioma so I'm very thankful of these web sites. Hope to hear from someone soon. Good luck. I wish you the best.

name: Barbara Campbell
email: Barbara@psimso.com
Our daughter Chelsea was born with a port wine stain that covered her left cheek to just above her lip over part of her nose, most of her eye and up the side of her head. She is 3 and a half and never showed any signs of Sturge-Weber thankfully. I would like to talk to anyone interested in how to make sure your child can grow with confidence and high self-esteem. We have completed 5 laser surgeries and we have been told she will have some areas that cannot be removed. I am especially interested in hearing from adults who have suggestions about keeping Chelsea's self esteem high.
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