Venous malformation

amother

Sun, Jan 06 2008, 4:55 pm

my sons arm keeps getting swollen. the dr.s think it may be a venous malformation
does any one have personal info about this?
I would also like a good dr that deals with this
thank you

greenfire

Mon, Jan 07 2008, 12:23 pm

http://en.wikipedia.org/wiki/C.....ation

maybe the information you are looking for is here ... but please check with your pediatrician

amother

Mon, Jan 07 2008, 3:16 pm

of course ive been to my pediatrician and to a specialist
I just wante someone with personal experiance with this

Clarissa

Mon, Jan 07 2008, 3:54 pm

amother wrote:

I would also like a good dr that deals with this
thank you

Were you unhappy with the specialist you saw? If not, maybe your ped will know of another? Also, if you want a doctor recommendation, it's always good to mention where you are, in case someone knows of a doctor.

amother

Mon, Jan 07 2008, 3:56 pm

yes I was unhappy with the specialist she was just too rushed to deal with concerned parents
And im in new york

amother

Tue, Feb 12 2008, 11:43 am

hi op here
im just bumping this up if anyone has any info on venous malformations

downsyndrome

Tue, Feb 12 2008, 11:47 am

Perhaps you should try to gain entry into the 'Special Needs' forum and you might find some imas who are familiar with this diagnosis.

amother

Copper

Wed, Mar 14 2018, 12:55 pm

old thread... but if any of these posters are still on, was it a VM in the end? who and how treated?

amother

Copper

Sat, Apr 28 2018, 11:20 pm

amother wrote:

old thread... but if any of these posters are still on, was it a VM in the end? who and how treated?

bump! op, still on here?

amother

Ginger

Sat, Apr 28 2018, 11:27 pm

Op here. My son just lives with it. We spoke to a few doctors including dr Francine blei who is amazing. They all said it would be at least three surgery’s to cure this and the malformation might grow back.
Sorry wish I could’ve been more of a help.

amother

Copper

Sat, Apr 28 2018, 11:44 pm

amother wrote:

It's a confirmed VM? so he never had any treatment? my daughter has a mixed venous LM.

amother

Ginger

Sat, Apr 28 2018, 11:48 pm

amother wrote:

its very similar. they are both so rare. treatment is usually the same.

What treatment was recommended to you?

amother

Copper

Sat, Apr 28 2018, 11:53 pm

amother wrote:

What treatment was recommended to you?

sclerotherapy
does your sons arm get more swollen if he's sick?

amother

Royalblue

Sun, Apr 29 2018, 4:28 am

My daughter has a vm in her arm we've done one lot of sclerotherapy and doing another one soon. Although it may very likely reoccur as she grows, we had no option of just leaving it as it is in/near a muscle and was causing her a lot of pain. Other than her arm being slightly larger than her other one, there is no visible physical marker such as purple bumpy skin as is common with most vm , which along with it being rare, made it much more difficult to diagnose ; almost 2 years of hell.

Last edited by amother on Sun, Apr 29 2018, 4:58 pm; edited 2 times in total