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-   -   Parkes weber? AVM on buttock and leg (http://birthmark.org/board/showthread.php?t=2328)

Magdalena 04-10-2007 04:50 PM

Parkes weber? AVM on buttock and leg
 
Hello
I am the mother of an three years old fantastic girl from Malmoe, Sweden. When she was born she had an big red spot on her right buttock and the dr did tell us that it would be gone of itself. As she was four weeks the tissue under the spot started growing and today the buttock is three times biger than the left buttock. It is warm (hot) we can se that it is growing down to the knee (just the tissue, not the spot). Her right leg is about 1 cm longer than the other, and her heart has been growing. Besides this she is a very vitaly and happy girl and she has no pain or bleeding yet.

She has done MR, ultrasound doppler and angiography: She has an big ball of fistulas with arterys and vessels. An high flow AVM.

The swedish dr says that they never has seen something like this before, and we have no diagnose. But after reeding studies and here on birthmark.org I understand this can be a Parkes Weber syndrome.

Because of hear hearts growing we have to start any treatment. They discuss to treat wit embolotheraphy with glue or sclerotherapy with alcohol. They says she will have 10 sclerotheraphys in the beginning, one every other month... I know the risks about the treatment but I think we have no choice.

I has a lot of questions about this and wonder if there is someone who has experience of something like this?
If we decides to treat with sclerotheraphy, dr Yakes from Colorado is comming to Malmoe in may and treat her. Maybe someone has expeirence of him?

I would be very glad for answer.
Best wishes to you all.
Magdalena Cruce, mother of Smilla
Sweden

missy 04-10-2007 10:31 PM

Dr. Yakes is the best!! You are lucky if you are going to be able to see him.

Other parents will chime in soon...

Missy

Magdalena 04-12-2007 05:27 PM

Yes Dr Yakes is very good. I`ve read a lot about him but I still wonder if someone knows if sclerotherapy is right tratement fon an aggressive high-flow AMV?
Someone with experience?

nickbar 04-14-2007 04:22 AM

His reputation is super...and I met him last fall and thought the world of him.

Good luck! and keep us posted. You'll here from other people soon I hope that have had tx with him. I was very impressed by is presentation and results.

c

dweiss1973 11-04-2008 08:23 PM

Son w/ Parkes Weber
 
Hi:

I have an 11 year old son w/ Parkes Weber. He has a port wine stain the whole length of his right leg. His thigh is 2" larger in diameter and his length is now 6cm longer than the left. His leg is hot to the touch and that is why he received the diagnoses of Parkes Weber. He sees a team of specialists at Cincinnati Childrens Hospital (Cincinnati, OH, USA). He recently had (2) 2" pins placed in his growth plate in his femur to slow down the excessive growth in that leg. He receives an MRI and a echocardiogram every year. He has yet to show any signs of heart trouble...thank goodness.

Please email me if you are interested in talking.

Jenmatt 02-23-2013 10:03 PM

Do u ladies still read this post I would love to contact with you

dancermom 03-24-2013 01:07 AM

If you don't get a response from these ladies, jenmatt, there are many Yakes patients at avmsurvivors.org whom you can contact.

dancermom 05-06-2013 07:27 PM

New group for Parkes Weber and Klippel Trenaunay
 
Hello, we have formed a new sub-group at http://avmsurvivors.org/ for Parkes Weber, Klippel Trenaunay, Sturge Weber, and Wyburn Mason. Please join us, and you will find information and support. Best wishes!


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