Vascular Birthmarks Foundation Forum http://birthmark.org/board The Vascular Birthmarks Foundation provides support and resources for children and adults born with hemangiomas, port wine stains, and other vascular birthmarks. en Tue, 18 Jun 2013 22:57:44 GMT vBulletin 60 http://www.birthmark.org/board/images/misc/rss.jpg Vascular Birthmarks Foundation Forum http://birthmark.org/board PHACE Syndrome Tampa, FL http://birthmark.org/board/showthread.php?t=6419&goto=newpost Tue, 18 Jun 2013 01:50:55 GMT Hi my name is Kristyn. Three weeks after my daughter was born a large facial hemangioma grew on the left side of her face. She has been on... Hi my name is Kristyn. Three weeks after my daughter was born a large facial hemangioma grew on the left side of her face. She has been on propranolol since she was 4 weeks old, she is now 10 months old. She had a mri/mra done last week that showed abnormalities in the blood flow of the brain and neck. It seems like in Tampa, FL NO ONE knows what they are doing. Does anyone have any advice? Trying to figure out what the next steps are. We've thought about taking her to the childrens hospital in Wisconsin. Any thoughts? ]]> Help and Resources for Hemangiomas koneal http://birthmark.org/board/showthread.php?t=6419 Is this Port Wine or Hem? http://birthmark.org/board/showthread.php?t=6418&goto=newpost Mon, 17 Jun 2013 16:16:16 GMT My daughter Madison is 1 month old. When she was born, the mark on her forehead was very faint. It has gotten darker and darker. We have been told... My daughter Madison is 1 month old. When she was born, the mark on her forehead was very faint. It has gotten darker and darker. We have been told it could just be an "angel kiss" or that it may possibly be a Hemangioma. The only thing is, it is not raised at all. It has not GROWN, just gotten darker. There has also always been a less dark spot on her eyelid, as seen in the picture. The two are not connected, but they both exist. This is what led to our research on SWS and Port Wine. I am hoping you can look at this picture and offer just an opinion. We need to act quick if that is what it takes.
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File Type: jpg Madison Bmark.jpg (26.8 KB)
]]> Port Wine Stain Help and Resources hmontgomery http://birthmark.org/board/showthread.php?t=6418 Hemangioma or PWS?? http://birthmark.org/board/showthread.php?t=6417&goto=newpost Mon, 17 Jun 2013 16:15:29 GMT My daughter Madison is 1 month old. When she was born, the mark on her forehead was very faint. It has gotten darker and darker. We have been told... My daughter Madison is 1 month old. When she was born, the mark on her forehead was very faint. It has gotten darker and darker. We have been told it could just be an "angel kiss" or that it may possibly be a Hemangioma. The only thing is, it is not raised at all. It has not GROWN, just gotten darker. There has also always been a less dark spot on her eyelid, as seen in the picture. The two are not connected, but they both exist. This is what led to our research on SWS and Port Wine. I am hoping you can look at this picture and offer just an opinion. We need to act quick if that is what it takes.
Attached Images
File Type: jpg Madison Bmark.jpg (26.8 KB)
]]> Help and Resources for Hemangiomas hmontgomery http://birthmark.org/board/showthread.php?t=6417 Pregnancy and PWS http://birthmark.org/board/showthread.php?t=6416&goto=newpost Tue, 11 Jun 2013 10:37:26 GMT Hello everyone!! I am a 24 year old female with a PWS that covers both arms, hands, shoulders, chest and parts of my upper back. I am pregnant with... Hello everyone!! I am a 24 year old female with a PWS that covers both arms, hands, shoulders, chest and parts of my upper back. I am pregnant with my first child and concerned about giving birth. After becoming pregnant i have noticed increased pain in my arms and a bleb , which i have neve uad until now. I was wondering how others with PWS have dobe with pregnancy and giving birth. I am trying to decide whether or not to have a csection. I have been searching for hinge about PWS and pregnancy but there is not much out there. Any help would be great!! Thanks!! ]]> Port Wine Stain Help and Resources candy618 http://birthmark.org/board/showthread.php?t=6416 5 month old with facial PWS http://birthmark.org/board/showthread.php?t=6415&goto=newpost Wed, 05 Jun 2013 13:40:37 GMT Hi, I am mum to a beautiful 5 month old baby girl with a confirmed PWS isolated to her on her right eyelid and patchy on her forehead and... Hi,

I am mum to a beautiful 5 month old baby girl with a confirmed PWS isolated to her on her right eyelid and patchy on her forehead and scalp.After the initial distress of the asthetics of the birthmark, my concern has naturally moved to the possible existence of SWS. We have seen an ophthalmologist, dermatologist and neurologist so far and an MRI has been scheduled for when my baby is 7 months old but I'm not even sure we'll avail of it as I'm concerned about a false negative.her first laser treatment is scheduled for Age 1 under GA. I would prefer a LA option as we could then avail of more treatments when she's younger but this doesn't seem to be available in Ireland. Some questions I hope you can help with:-

1. At what age will be MRI be conclusive? Our neurologist seemed to suggest Age 1 so perhaps we should defer?

2. Is there anyone out there who has a PWS on the eyelid and forehead who doesn't have SWS. Although it appears to manifest itself in 25% of cases I can't seem to find anyone despite trawling the discussion boards.

3. In the absence of a seizure what other signs should I be looking for in my baby? She is a lovely smiley baby but quite needy and I do have concerns about her fine motor development (she uses left and right equally)

4. Is laser administered in the UK under LA and does anyone have any idea of costs for a private patient( we can't avail of NHS as we live in Ireland)

Thanks so much in advance,

A worried Mum ]]> Port Wine Stain Help and Resources Mary1978 http://birthmark.org/board/showthread.php?t=6415 Help with Transportation http://birthmark.org/board/showthread.php?t=6414&goto=newpost Tue, 04 Jun 2013 23:26:10 GMT I am 52 and have a right facial hemangiomana. It is growing quite a bit and is from my chin all the way up to my forehead, I heard hormone changes... I am 52 and have a right facial hemangiomana. It is growing quite a bit and is from my chin all the way up to my forehead, I heard hormone changes can cause this...make sense, now.... I have never had it treated due to never having the funds. I have been recommended to see Dr. Yakes in Colorado (about 800 miles from me), will take a minimum of 6 treatments IF LUCKY. I have family there, so place to stay. Is there any help out there to cover transportation and costs? How are people able to treat these issues with funding?? ]]> Help and Resources for Hemangiomas Janey http://birthmark.org/board/showthread.php?t=6414 Has anyone seen black seedy looking things? ..PLEASE HELP! http://birthmark.org/board/showthread.php?t=6411&goto=newpost Tue, 28 May 2013 15:35:20 GMT I was wondering if anyone knows ANYTHING about what i am talking about:
My daughter is 10 months old and has two types of H's ( i forget the technical names) she has a large tumor one thats filles with blood vessels and on top of it, is a strawberry one. They are on her neck on the side, and she has been seen for them, BUT recently within the last 2-3 months i have noticed these little black things growing out of the strawberry one. The best way i can describe it, they literally look like seeds on a strawberry, afirst i freaked out because they actually kinda looked like knats where sitting on it, but its not of course and there are about 9-10 if them throughout it. She cannot get back in to the Derm. until July ! and i am very worried because i cannot find a single thing about it,which worries me that something may be wrong. Does anyone know anything?? i am very concerned! Thank you ]]> Help and Resources for Hemangiomas amanda87 http://birthmark.org/board/showthread.php?t=6411 any chapter or specialist in the philippines? http://birthmark.org/board/showthread.php?t=6410&goto=newpost Sun, 26 May 2013 00:19:11 GMT my son was diagnosed with lymphangiohemangiomansince he was...]]> hi everyone,

has anyone know a specialist based in the philippines where i can go to?>

my son was diagnosed with lymphangiohemangiomansince he was 5 months old ]]> General Resources mommay2009 http://birthmark.org/board/showthread.php?t=6410 Is this a hemangioma? http://birthmark.org/board/showthread.php?t=6371&goto=newpost Sat, 25 May 2013 04:36:47 GMT At birth my daughter had what looked like a small bruise under her right upper arm. During her 2 week follow up appointment with the pediatrician the... At birth my daughter had what looked like a small bruise under her right upper arm. During her 2 week follow up appointment with the pediatrician the bruise had grown to a red birthmark that covered her right armpit, under her right arm and on her chest towards her right nipple. When I asked her doctor what it was she said that it was a birthmark and that if it bothered her when she was older, it could be lasered off. I didn't think much of it at the time and so didn't ask what type of birthmark it was. It has now been two and a half weeks since then and it has grown a small amount but looks about the same. It is red, and slightly raised and quite large. I don't think that it is a port wine stain because it wasn't there at birth. I don't think it is a salmon patch because it is slightly raised and is on her arm/chest and most of those don't present in those places. So I am left wondering if it is a hemangioma. If it is, it is rather large and I am worried about it growing anymore. It isn't raised as much as most hemangioma's seem to be but maybe it hasn't grown as much as it will. She is only 1 month and I know that they typically don't stop growing until 6 months to a year. I would like to add a picture but had trouble loading it onto the forum. Perhaps I could email it to the moderator and they could help post it. I plan on asking my pediatrician about it again when I see her in a week and a half. I also plan on getting a referral to a pediatric dermatologist. Thanks for your help and input. ]]> Help and Resources for Hemangiomas JayDee http://birthmark.org/board/showthread.php?t=6371 Port Wine Stain on leg http://birthmark.org/board/showthread.php?t=6370&goto=newpost Fri, 24 May 2013 23:47:07 GMT Hi! I am new here and appreciate all your expertise and experience! Our chiropractor is working on relieving a litany of ailments our 18 year old... Hi!
I am new here and appreciate all your expertise and experience! Our chiropractor is working on relieving a litany of ailments our 18 year old daughter has. He recently saw her large Port Wine Stain(s) all over her left thigh and asked if they indicate any other condition(s).
My daughter suffers from digestive issues and has scoliosis. She also has suffered terribly with very enlarged tonsils which were removed. We are looking for a link to tie all her conditions together.
Does anyone know if PWS has immune system relevance? Or anything else?
Thanks! ]]> Port Wine Stain Help and Resources buckscomom http://birthmark.org/board/showthread.php?t=6370 Is this considered fast-growing? (on tip of nose) http://birthmark.org/board/showthread.php?t=6369&goto=newpost Fri, 24 May 2013 02:07:10 GMT 2 months ago, my daughter was born with just a slightly pink spot on the tip of her nose above her left nostril. Now the spot has grown bigger,... 2 months ago, my daughter was born with just a slightly pink spot on the tip of her nose above her left nostril. Now the spot has grown bigger, bright red and has changed the shape of her nose and nostril. It also seems to have caused some swelling on the bridge of her nose (where it's not red). I wasn't too worried at first, but now that it's changing the shape of her nose, I'm growing very concerned.

I see our pedi for our 2 month appointment this week and I will be asking for a referral ASAP, but I am hoping to find some reassurance here that it's not too late to reverse the damage so far.

Here are pictures of it at 2 days after birth, 3 weeks ago (5 weeks of age) and today.
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File Type: jpg 2days.jpg (59.5 KB)
File Type: jpg 5weeks.jpg (62.2 KB)
File Type: jpg 8weeks.jpg (65.2 KB)
]]> Help and Resources for Hemangiomas mmc http://birthmark.org/board/showthread.php?t=6369 Painful Venous Malformation Lower Left back http://birthmark.org/board/showthread.php?t=6363&goto=newpost Thu, 23 May 2013 01:53:18 GMT I recall posting here years ago, and I luckily had a few years almost pain free, or at least it seemed manageable until the past 6 months. Here is... I recall posting here years ago, and I luckily had a few years almost pain free, or at least it seemed manageable until the past 6 months. Here is my story.

I am a 35 year old woman in Calgary, Ab Canada. When I was 15, i started feeling a painful lump in the lower part of my back, jsut to the left of my spine. I had gone to doctors a few times, and I was diagnosed with a Lipoma ( benign fatty cyst). I never had any ultra sounds or MRI's, and eventually went into surgery at 16 years old and they removed a mass from my back. It was extremely painful. 2 years later, after a few cortisone injections, I was in pain again. Everytime i went to the doctor, they didn't know what to do, because I was diagnosed with a Lipoma, and they are not supposed to be painful.

Years went on, of going to see doctors and finally i went to a walk in clinic in immense pain when I was 26. The pain had spread across the lower part of my back, and was moving towards my hip area. The very kind doctor, asked me if I had ever had an MRI and sent me for my first one. I have had 4 MRI's since then, with and without dyes.

it was determined that I had a venous malformation. The only doctors in Calgary were at the Children's hospital VB clinic, and they had never seen this type in this location of the body before. Becuase it was so large by this point, surgery was not an option. They assessed me to see if sleriotherapy would be an option. After discussing this, they were not able to offer me any certain answers. Eg.. if i would be pain free, or if my range of mobility would be damaged, due to the location of it being at the base of my spine, moving out towards my hip.

The birthmark I have, is not visible to the eye. However, IT IS EXTREMELY PAINFUL AT TIMES... Where I cannot lay on my back, or my side. Sometimes it hurts to wear underwear, or pants, especially jeans and a belt. it hurts to walk, sit, laydown, and I cannot exercise.

I had related the pain to stress at times. However, as it is continuing to grow, and the pain is back full force, I am limited to the things i can do.

I called the VB clinic in calgary the other day, so have a revisit with the doctors, and possibly another MRI, in hopes some new research has come up in the past 5 years. I was informed that they no longer work with Adults, and will pull my file and try to refer me.

So, now, I am highly emotional, stressed, in immense pain, waiting again, to see if anything can help me.

I am curious if there is anyone in Alberta, or Calgary more specifically who is facing similar issues. I have no one to talk to who understands what this is like.

Wishing all you out there comfort, security and painless journeys. ]]> Adults Living with Birthmarks jerilee.rose http://birthmark.org/board/showthread.php?t=6363 Discouraged... http://birthmark.org/board/showthread.php?t=6348&goto=newpost Tue, 21 May 2013 20:18:07 GMT My son had developed his hemangioma about a week after birth. Since it was so close to his eye they started treatment right away. (About 1 month... My son had developed his hemangioma about a week after birth. Since it was so close to his eye they started treatment right away. (About 1 month old) At first they put him on propranolol & it seemed to be working however not as fast as they would have liked. Then it seemed to be no longer helping so they switched us to Athenolol (same class) It has gotten a lot flatter and less red but I'm still discouraged at the length it is taking. Perhaps I'm not administering the prescription properly? It seems to work really well at first but then as the prescription gets older the results slow down. He is now 8 1/2 months old and taking this prescription twice a day. (Up to 5mls now each time) I've already asked about Timolol but they refuse to prescribe it to me as there has not been enough studies on it. I'm also wondering if this means he will have his birthmark longer or if he just does not respond as well to the meds as other babies. I'm discouraged but trying to stay positive. It has not affected his vision so we are very happy about that.
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File Type: jpg NEW IPHONE 099 - Copy.JPG (97.2 KB)
]]> Help and Resources for Hemangiomas Jessica727 http://birthmark.org/board/showthread.php?t=6348 Symptoms after avm in brain http://birthmark.org/board/showthread.php?t=6336&goto=newpost Mon, 20 May 2013 15:42:48 GMT I had a crainotomy in September for an vascular malformation. In the last month and half I have been getting increased headaches on the right side... I had a crainotomy in September for an vascular malformation. In the last month and half I have been getting increased headaches on the right side where I had my surgery on top of my right eye turning red and goopy. Has anyone encountered this as an issue for them? I have made an appointment with a neurologist specialist but its not until August. ]]> AVM Help and Resources Lunatink http://birthmark.org/board/showthread.php?t=6336 Can my daughter stop laser treatement for PWS after 10 treatments? http://birthmark.org/board/showthread.php?t=6332&goto=newpost Mon, 20 May 2013 08:53:08 GMT My daughter had 10 times v-beam 595 treatment already on cheek for PWS. She is 8 years old now. It helped and we are satisfied although it did not... My daughter had 10 times v-beam 595 treatment already on cheek for PWS. She is 8 years old now. It helped and we are satisfied although it did not fully disappear.
Now we just want to maintain the effect.
Can we stop laser treatment or we need to keep on like once a year to maintain the effect?
I heard before once you used laser you have to keep on the life time, otherwise it will resurge. Is that true?
Looking forward to advice. ]]> Port Wine Stain Help and Resources zhou http://birthmark.org/board/showthread.php?t=6332