A malformationn always colouring visible ? - Vascular Birthmarks Foundation Forum
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Old 12-23-2009, 09:17 PM
Mariposasiempre Mariposasiempre is offline
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Join Date: Dec 2009
Posts: 2
Default A malformationn always colouring visible ?

AV malformation or venous malformation is untill now the diagnosis in favour (after echo, colour doppler echo, x-rays and MRI) for an intra and extra complex lobular serpigenous looking vascular lesion in the posterior thigh (.partly superficial of m.semitendinosus) of our 16 year old son.
He only discovered it by coincidence a few months ago, since it doesn't hurt.
It is not so easy to feel but once you spot it, it is obvious and very hard very fixed to the muscle, it doesn't change in size. The skin looks normal you don't see any colouring or veins or what ever? It messures now 8cm to 5cm to 4 cm.
The doctors don't think it is a haemangioma because it only suddenly appeared now. Either it is a kind of a haematoom since there are no calcifications (he has since 2 years a platelet function problem and is short of platelets, as well he had a few months ago a progressiva pigmentosa purpura.)
All this is really unbelievable. It is hard to believe that right after one rare diagnosis something else shows up.
We are now waiting for a definite diagnosis and for a proposal of treatment.
I red a lot on this VBF forum, it is a big help.
I am always interested to get some opinions and advices.
Thank you very much.
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Old 12-23-2009, 10:54 PM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078

No, malformations do not have to show external staining. Where are you located?
Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
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Old 12-23-2009, 11:37 PM
Mariposasiempre Mariposasiempre is offline
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Join Date: Dec 2009
Posts: 2

Dear Corinne,

We live in Belgium and are now seeing a haematologist working together with a multidisciplinair team for soft tissue tumoren and vascular malformations.
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