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-   -   Pain in Hemangeomas (http://birthmark.org/board/showthread.php?t=187)

beetobanana 05-02-2003 12:04 AM

Pain in Hemangeomas
 
:'( I feel sorry for you if your answer is just like mine. Mine hurts everyday. ??? I have so many questions about hemangeomas, but Thank God that mine is on my right arm from my fingertips to my elbow. My Mom and me don't know yet what kind of hemangeoma I have, yet, but we're looking. We think it's some kind of Syndrome thing... :o New to me! Send me a message or talk to me on Yahoo, I'll be glad to talk to you!

hankbartenbach 05-02-2003 05:16 AM

Re:Pain in Hemangeomas
 
Hi Beetobanana, My name is Hank. I am glad to hear that you found this site. I am 20 years old with several H's on my head.
I was wondering how old are you?
Second you did not put in a vote. You will have to go in and do it seprate from a message.
Well I know one syndrome that you probably have is Sturge-weber syndrome. I have that but it is not in all people that have H's or glacoma, or Port Wine Stains.
If you are interested in learning more about sturge-weber you can go to their website the address is www.sturge-weber.com Sturge-weber is a foundation I belong to and is similar to this foundation, but has different topics.

If there is any questions you would like to ask me please do I am here for you to answer questions.

Talk to you soon.

Hank B

Cuety 05-05-2003 05:58 PM

Re:Pain in Hemangeomas
 
Hello, im Stef and I am 20 years old also. I have CVM from my back all the way to my toes. I don't know exactly what you have, but it seems similar to mine. Most H's are in spots. I have never seen or heard of someone who has had a bigger one than me. I feel bad, I know it hurts, especially for it to be on a part of your body that you use often, I totally understand that. Sometimes, I can't even walk, but I try to cope with it. Is your lesion smooth or rough? did you have this at birth or did it just grow with you, if so, how old when it developed? Are your fingernails thicker where the birthmark is? two of my toes are very thick and ingrown because of it. Write back...

skydives 05-06-2003 04:10 PM

Re:Pain in Hemangeomas
 
you are why I looked up this site. I am not a teen any longer,but I have port wine stains,and strawberry birthmarks. I have never even heard of anyone like me. mine are on my chest, r.shoulder, all down my r.arm and hand,r.shoulder blade, entire butt, back of both thighs, r.calf, and r. foot. I went to U.of M to Dr.Rasmussen and had a little bit on my chest lightened. It worked so I stopped because my bithmarks are part of who I am I personally have no pain with mine.I am 40 years old,a wife and mother of 5. I hope you are able to be what you want and do what you want with your life as I have. good luck with your search. SKYDIVES

kristy 06-24-2003 09:16 PM

Re:Pain in Hemangeomas
 
At the age of 12, I was rushed to the emergency room because of this huge bump(3 inches wide) that suddenly appeared on my left shoulder. They thought that it was cancer, but it turned out to be a hemangioma. Apparantly it had been growing for several years. It was more of an internal hemangioma and since those blood vessels built up, it stopped the blood flow to my heart and caused a blood clot. I almost died. I am now 18 and have already had 2 more surgeries. I have a lot of pain, so every 6 months, I get cortizone shots to help with the pain. It actually works. You should ask your doctor if it might help you. I also have another hemangioma on my right leg that is about 5 inches. It doesn't hurt, but I am definately self conscious about it. So, you definately need to have yours checked out often. If you have any questions about hemangiomas, maybe I could help?

blondefairyinphx 09-08-2006 02:04 AM

hi my son is 13
 
my son is 13 and has a hemongoma on his lower lip, it makes his lip stick out and his is really dark purple and people make fun of it and say things, i think it hurts me the most because he is use to it but any way, he has other problems that im trying to find a doctor or some one who can help me tho get him some help. can you chat with me some time?

lisa

JeZouMaarIrisHeten! 05-08-2007 02:26 PM

I have a CLM, it hurts doing cardio fitness and heat. Not every day but every other day I think.

Hopely I'll have a surgery to remove the cystes, the suficial LM is fading away. It 'll disappear after several laser treatment.

cristina_zefira 07-28-2007 12:01 PM

Hello, my name is Cristina, I am a general Practitioner Trainee, from Romania. My 2 years old daughter was born with an hemangioma on her back. First it was a stain, but it began to grow fast. Now it has 4,5 on 5,5 cm. It doesn't hurt her, and it has the strawberry aspect and shape. I am glad it is not on her face, it would have been a trauma for her and us. Still, Romanian doctors are in favour of the surgery (generally speaking, not in my case, I have only seen a dermatologist that advised me to wait until 6 years or more) as soon as possible (before becoming too large), while I am reading the advice of this foundation Specialists that says that it could involute even until 10-15 years. My opinion was also to wait, but it develops as the child grows. ( it was 3,5 on 4,5 when she was 6-7 months.). Her general state is good, she is developing as a normal child, she looks as if she was 3.
I would like to know if there is anyone in the same situation, perhaps someone older with a similar hemangioma that has not been operated and how is it that it looks like now.


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