Venous malformation

amother

Ginger

Sun, Apr 29 2018, 6:48 am

amother wrote:

sclerotherapy, as it it in her mouth. its pretty much the only option.

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

Yes I always know when he’s getting sick his arm blows up.
Are you in NY. Whose doing the sclerothetapy for you?

amother

Ginger

Sun, Apr 29 2018, 6:50 am

Amother wrote:

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.

My sons arm also thank god is normal color it just gets very swollen and painful

Where are you located. Which doctors have you gone to?

amother

Royalblue

Sun, Apr 29 2018, 7:51 am

I'm located in the UK, and she gets treated in gosh (a top children's hospital). Have they done an ultrasound to confirm the transaction it is vm?

Last edited by amother on Sun, Apr 29 2018, 4:59 pm; edited 1 time in total

amother

Ginger

Sun, Apr 29 2018, 8:33 am

amother wrote:

I'm located in the UK, and she gets treated in gosh (a top children's hospital). Have they done an ultrasound to confirm the transaction it is vm?

yes we have done ultrasounds and MRIs

amother

Royalblue

Sun, Apr 29 2018, 9:05 am

Well sclerotherapy is seemingly the best option. I believe the other option is full on surgery, cutting open and removing the vein.
Sclerotherapy is way less invasive, and BH my daughter felt really good straight away. (she couldn't bend her arm for a few days but, BH, today, 12 days after surgery, she can bend it almost all the way. Her hand is still only very slightly sore. She will be having the sclerotherapy again in a few weeks and after that we can analyse the success.

Last edited by amother on Sun, Apr 29 2018, 4:59 pm; edited 1 time in total

amother

Gold

Sun, Apr 29 2018, 9:05 am

My daughter has one on her head. We’re just watching it now. I asked if it could be removed and was told that if it gets cut or whatever she will bleed out very quickly. Since it’s in a place where it won’t be bothered we’re leaving it alone and observing. If it bothers her we’ll have to get it removed but it’s risky. I haven’t noticed it her bigger when she’s sick and specialist said it should get absorbed into her head eventually. She gets ultrasounds to monitor it. It’s hard to get an ultrasound of the head - the goo and everything and she’s a little kid who has been through a lot.
Never thought about asking for access to the SN forum - I always said oh this issue isn’t so bad, others have it worse… but maybe I’m in denial.
Edited to ad - she has had (and still has some) other minor issues as well - allergies, other skin issues, etc. not just this.

amother

Royalblue

Sun, Apr 29 2018, 9:16 am

My daughter's is on her upper arm. It is really not visible at all on the outside. It was only discovered because of the tremendous pain she was in.

Last edited by amother on Sun, Apr 29 2018, 4:59 pm; edited 1 time in total

amother

Royalblue

Sun, Apr 29 2018, 9:18 am

amother wrote:

My sons arm also thank god is normal color it just gets very swollen and painful

Where are you located. Which doctors have you gone to?

Just wondering, is there a specific pattern to his pain? Time of day?

Last edited by amother on Sun, Apr 29 2018, 5:00 pm; edited 1 time in total

amother

Ginger

Sun, Apr 29 2018, 9:21 am

amother wrote:

Just wondering, is there a specific pattern to his pain? Time of day?

It’s right above his elbow. It’s the worst right when he wakes up in the morning. It on his arm that he puts tfillin on. We were worried about that but bh it’s been ok.

amother

Royalblue

Sun, Apr 29 2018, 9:38 am

amother wrote:

It’s right above his elbow. It’s the worst right when he wakes up in the morning. It on his arm that he puts tfillin on. We were worried about that but bh it’s been ok.

That's really funny, because it was waking my daughter up throughout the night and it was crazy painful in the morning, but within one to two hours of her waking in the morning it was all gone.

Just realising that posting under my sn might give me away to those who know about this.

Please pm me, I may have some info that could help you.

Last edited by amother on Sun, Apr 29 2018, 5:00 pm; edited 1 time in total

amother

Copper

Sun, Apr 29 2018, 11:29 am

amother wrote:

Hi I have multiple venous malformations. I am treated by dr Berenstein in mount Sinai

my daughter also gets treated by dr. berenstein.
how many years have you been doing treatment already?

amother

Copper

Sun, Apr 29 2018, 11:33 am

amother wrote:

My daughter's is on her upper arm. It is really not visible at all on the outside. It was only discovered because of the tremendous pain she was in.

my daughters was seen before birth, but only diagnosed with MRI when she was a few days old.
How old is your daughter? how old was she when diagnosed?

amother

Brunette

Sun, Apr 29 2018, 11:34 am

amother wrote:

my daughter also gets treated by dr. berenstein.
how many years have you been doing treatment already?

I just did two treatments of schlerotherapy last winter

amother

Copper

Sun, Apr 29 2018, 11:46 am

amother wrote:

I just did two treatments of schlerotherapy last winter

I hope you're doing good now!
...If you see us in IR just Wave

amother

Copper

Sun, Apr 29 2018, 11:48 am

amother wrote:

amother

Brunette

Sun, Apr 29 2018, 11:53 am

amother wrote:

ouch. my daughter is still a baby. and such a happy child. you wouldn't dream the pain she is in all the time... hers is so large, she cannot close her mouth at all Sad

Mine was on my mouth too, not pleasant!
Bh it’s basically gone now

Do you know of any other doc besides Berenstein that treats these?

amother

Gray

Sun, Apr 29 2018, 11:58 am

I have one on and in the mouth. I have been treated by Dr. Bernstein for sclerotherapy, but he consults with my primary doctor, Dr. Milton Waner. Dr. Waner has done both laser and excisions on me, and they are used to babies.

amother

Copper

Sun, Apr 29 2018, 11:59 am

amother wrote:

Mine was on my mouth too, not pleasant!
Bh it’s basically gone now

Do you know of any other doc besides Berenstein that treats these?

amother

Copper

Sun, Apr 29 2018, 12:01 pm

amother wrote:

I know they work together, but thought Waner does more of the hemangiomas and pws? who did the excisions? Dr. O?