Does anyone know much about Tufted Angioma and KHE? - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 08-20-2010, 07:40 PM
alexisuk alexisuk is offline
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hi there, we first attended great ormond street in march this year, bloods and an ultrasound were done then, the doctor said the bloods indicated that it may be a tufted angioma but his clotting levels were fine! the tufted angioma was confirmed by an incision biopsy in July, but I haven't got another appointment until October, the doctor offered no treatment or anything for pain control, as my son is so young she said it's hard to tell if he is in pain! but if I catch the angioma when dressing him or picking him up he gets very distressed.
I feel very isolated and feel guilty for worrying as doctor said it could have been much worse. I can't find anyone in this country to speak to and cannot afford to go abroad.

I really don't know anything about the implications of the tufted angioma but was lead to understand that he doesn't have the other complication that goes with this???
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  #12  
Old 08-21-2010, 12:12 PM
sarahs mum sarahs mum is offline
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Hi Alexis,
keep searching and doing your research. E-mail doctors around the world directly and ask for their opinion. ask everyone you know to ask everyone they know. our daughter was diagnoised with a KHE at 12 weeks of age. she is now 20 months old. she has had weekly vincristine and daily steroids with variations to the doses here and there.
so far, i have found out that there is no magic quick fix answer. everyone tells me it will take a long time, probably years... maybe 4 if we're lucky.
in the meantime, we just try to enjoy her as though everything was normal.
good luck. i'm happy to chat if you like.
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  #13  
Old 08-21-2010, 09:48 PM
nickbar nickbar is offline
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Also, have you checked out VBF UK?
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  #14  
Old 08-29-2010, 08:20 PM
alexisuk alexisuk is offline
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hi again , thanks for the info... I've contacted the hospital again and they have sent me two appointments, one for the pain clinic and one for the vascular consultant, they are not until the end of October though... I am really frustrated as I still can't find anyone here to get info from or with experience of tufted angiomas and Henry is in pain, it seems bad to have to wait so long
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  #15  
Old 09-10-2010, 02:45 PM
nickbar nickbar is offline
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Call the offices again and tell them your child is in serious pain and if they could put you on a waiting list for any cancelled appointments sooner. Also, remember that it is likely not a medical professional making the appointments, so ask if you can speak to the nurse or the doctor directly.
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  #16  
Old 02-04-2011, 08:21 AM
rachael shields rachael shields is offline
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Hi all,

It has been a long time since I was on this forum and I feel guilty after reading all these new stories. I would like to get in touch with a few to discuss how they are going with their treatments and so forth.....to alexisuk...there is treatment and pain management available and I hope by this time you have had some joy with the doctors.

I have forgotten how i PM people of this forum or else I would PM a few of you.....feel free to PM myself...
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  #17  
Old 09-05-2011, 12:05 AM
PE Islander PE Islander is offline
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Default Tufted Angioma

Hello everyone,
I am a 33 year old female who was diagnosed with tufted angioma when I was 15. (It was diagnosed as a result of a biopsy on the back of my neck where I had a painful red area for the previous 1-2 years.) Everyone on this post seems to have little babies with this condition. I feel so OLD! But would be willing to answer any questions you have. I was the first case in Atlantic Canada, and noone seems to know what to do...although I have seen specialists in PEI, NB and NS. I have had some pretty crazy suggestions, and some pretty lame suggestions. Tufted Angioma is painful to touch and when touched can trigger shooting sharp pains surrounding the area. Clothing tags in the neck area irritate and trigger painful episodes. I think that the 'roots' of the tumor are deep and are not limited to just the surface redness and pain. I can feel another one growing long before it is visible on the surface to anyone else. I think that it is affected by hormones, as it is increasingly sensitive around my menstrual cycle. During my pregnancy, the painful episodes increased, and the growth of the area occured more rapidly. (Possibly due to folic acid stimulating the growth of new cells?) I have had steroid injections in the area, and I have had the areas cut out. (Only temporary relief, as I believe that if one little cell is left behind a new one grows). All in all, I am very grateful that it is not cancerous, and I am very lucky that my tufted angioma is hidden with my long hair. Every once in a while I google it, and hope that someone has found a cure. The Childrens Hospital in Boston seems like a great spot. I wish I would have been forwarded there when I was young. They seem to have some new techniques and ideas that weren't available in the 90's. I would love for someone to be interested in my case to help me. I would love to use my experiences to help others.....I hope this is helpful!
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