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Venous malformation
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amother
Copper


 

Post Sun, Apr 29 2018, 9:02 am
Any of you going to the conference in October? its being on Shabbos so undecided...
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amother
Brunette


 

Post Sun, Apr 29 2018, 9:03 am
amother wrote:
Supposedly he's the best (I can vouch for nicest dr. & team for sure) we were recomended to go to Boson to vascular anomalies center. dont know if drs better there or its just that you have a team with different specialists if needed. Cincinnati & John Hopkins also big in vascular anomalies.
did it effect your breathing? my daughter has a trach as her airway is at risk...


No b”h doesn’t affect my breathing, it’s more of a cosmetic concern by me...I like his team but he really gets on my nerves, wish there would b some1 else as good as him locally
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amother
Brunette


 

Post Sun, Apr 29 2018, 9:04 am
amother wrote:
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.


Sorry if I’m asking too much but do you have kids and did it get worse with pregnancy? Mine do 😭
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amother
Copper


 

Post Sun, Apr 29 2018, 9:06 am
amother wrote:
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.

Do you see it swell when she is sick? also are you in NY? which drs did you see?
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amother
Copper


 

Post Sun, Apr 29 2018, 9:08 am
amother wrote:
Sorry if I’m asking too much but do you have kids and did it get worse with pregnancy? Mine do 😭
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amother
Copper


 

Post Sun, Apr 29 2018, 9:09 am
amother wrote:
Sorry if I’m asking too much but do you have kids and did it get worse with pregnancy? Mine do 😭

Do you generally have bleeding?
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amother
Brunette


 

Post Sun, Apr 29 2018, 9:10 am
amother wrote:
oy vey. my daughter is 9 months old. already worrying about this...
I see it flare up with a slight cold Sad. I wish they find a cure for it...


Just to calm you down...I have a few kids Bh n all Bh healthy! Didn’t have any complications during pregnancy or delivery from it! Just that it gets worse so bothers me cosmetically
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amother
Brunette


 

Post Sun, Apr 29 2018, 9:11 am
amother wrote:
Do you generally have bleeding?

What du mean by bleeding?
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amother
Gray


 

Post Sun, Apr 29 2018, 9:22 am
Double post
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amother
Gray


 

Post Sun, Apr 29 2018, 9:25 am
amother wrote:
Sorry if I’m asking too much but do you have kids and did it get worse with pregnancy? Mine do 😭


Yes and yes. I also need to go back for treatment after other surgery, including having my wisdom teeth out. I sometimes feel a weird almost creepy crawly feeling when it is growing. I find that going in for laser soon after helps, since I had my big excision to get most of the mass out.

I used to find that it hurt in the mornings, and sometimes I still do. It depends on what position I sleep in, and is more likely to happe when I am under the weather.

I so wish doctors had understood these things when I was younger. I had a mark on my mouth when I was young and the doctors said it would fade. Years later it was areal problem. Now, one of my babies had a flat mark when born. I took him to Dr. Waner at age one month. At six weeks, they lasered it off. No sign at all since, five years later.
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amother
Brunette


 

Post Sun, Apr 29 2018, 9:25 am
amother wrote:
Yes and yes. I also need to go back for treatment after other surgery, including having my wisdom teeth out. I sometimes feel a weird almost creepy crawly feeling when it is growing. I find that going in for laser soon after helps, since I had my big excision to get most of the mass out.

I used to find that it hurt in the mornings, and sometimes I still do. It depends on what position I sleep in, and is more likely to happe when I am under the weather.

I so wish doctors had understood these rhibgs when I was younger. One of my babies had a flat mark when born. I took him to Dr. Waner at age one month. At six weeks, they lasered it off. No sign at all since, five years later.


What do you mean by laser? Who does it for you? Thinking of I should go to Dr. Waner. I also have a weird feeling when it initially gets bigger...I’m careful to sleep in positions that don’t make it painful cuz it’s definitely more painful when I wake up
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amother
Gray


 

Post Sun, Apr 29 2018, 9:33 am
Brunette, I also found Dr. Berenstein very... abrupt? in his manner. Dr. Waner is very personable and good. This does mean you can wait for a very long time in his waitng room. But they eah specialize in different modalities.

Copper, I have seen situations as you describe healed flat and functional. I would check in with Dr. Waner, and specifically mention that she can't close her mouth. They will likely get you in as soon as possible, which they do whenever there is risk of airway issues (meaning, affects the structure of the mouth). He has reduced giant protrusions to none (it takes time).
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amother
Royalblue


 

Post Sun, Apr 29 2018, 9:34 am
Wow these posts make me so thankful to Hashem that my daughter's vm is not a big deal and will IYH be okay.
Interestingly, I have not noticed a difference when she is not feeling well or under the weather, unlike what sine of you are saying.
For those of you that sclerotherapy didn't do anything can you not have it surgically removed?


Last edited by amother on Sun, Apr 29 2018, 2:00 pm; edited 1 time in total
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amother
Brunette


 

Post Sun, Apr 29 2018, 9:37 am
amother wrote:
Brunette, I also found Dr. Berenstein very... abrupt? in his manner. Dr. Waner is very personable and good. This does mean you can wait for a very long time in his waitng room. But they eah specialize in different modalities.

Copper, I have seen situations as you describe healed flat and functional. I would check in with Dr. Waner, and specifically mention that she can't close her mouth. They will likely get you in as soon as possible, which they do whenever there is risk of airway issues (meaning, affects the structure of the mouth). He has reduced giant protrusions to none (it takes time).


Ye he’s just not pleasant to be around...has made weird comments...

Who does the laser for you Waner or Berenstein n what does the procedure entail? Easier than schlerotherspy?
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amother
Gray


 

Post Sun, Apr 29 2018, 9:38 am
amother wrote:
What do you mean by laser? Who does it for you? Thinking of I should go to Dr. Waner. I also have a weird feeling when it initially gets bigger...I’m careful to sleep in positions that don’t make it painful cuz it’s definitely more painful when I wake up


Dr. Waner's office does my laser. Small ones can be done in office. Bigger jobs need anesthesia and are done outpatient in the OR. They zap the vessels to cut off the blood flow to them, or something like that.

This website may be helpful to people:
https://www.birthmark.org
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amother
Brunette


 

Post Sun, Apr 29 2018, 9:39 am
amother wrote:
Wow these posts make me so thankful to Hashem that my daughter's vm is not a big deal and will IYH be okay.
Interestingly, I have not noticed a difference when she is not feeling well or under the weather, unlike what sine of you are saying.
For those of you that sclerotherapy didn't do anything can you not have it surgically removed?


Are you sure your daughter has a venous malformation and not a hemangioma? These two are often confused. I was originally told I have hemangiomas
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amother
Gray


 

Post Sun, Apr 29 2018, 9:45 am
Venous malformations often take over or embed themselves in regular tissue. Fully removing them surgically can be complicated, and can sometimes leave undesired cosmetic and functional results. A lot of treatment combines modalities: excision/surgical removal for bulk, laser and or sclerotherapy depending on where it is and what it responds to. I've had all three.
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amother
Brunette


 

Post Sun, Apr 29 2018, 9:45 am
amother wrote:
Dr. Waner's office does my laser. Small ones can be done in office. Bigger jobs need anesthesia and are done outpatient in the OR. They zap the vessels to cut off the blood flow to them, or something like that.

This website may be helpful to people:
https://www.birthmark.org


Thanks will definitely check out the website

How many procedures did you have done? I recently had schlerotherapy done twice n I’m so over it! Wish it would b more permanent!
As a side note, thought I was the only Jewish mother with this, it’s so isolating
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amother
Royalblue


 

Post Sun, Apr 29 2018, 9:48 am
amother wrote:
Are you sure your daughter has a venous malformation and not a hemangioma? These two are often confused. I was originally told I have hemangiomas


No she has a vm. As I mentioned before, she has no visual birthmark as would be with hemangiomas. She has a vm in her left arm. It is deep in the arm, in a muscle so there are no outward indicators. It does not affect her d2d life and she has full function of her arm. But, it does cause her alot of pain. They hope to treat it completely with sclerotherapy. IYH it will be successful


Last edited by amother on Sun, Apr 29 2018, 2:01 pm; edited 1 time in total
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amother
Gray


 

Post Sun, Apr 29 2018, 10:14 am
amother wrote:
Thanks will definitely check out the website

How many procedures did you have done? I recently had schlerotherapy done twice n I’m so over it! Wish it would b more permanent!
As a side note, thought I was the only Jewish mother with this, it’s so isolating


I started off with a combo of laser and excision to get the bulk out. I did two lasers to follow up. Then I went back after each childbirth, and after surgeries. The last one didn't help much, so I did a sclerotherapy too. I'd say for hospital procedures, maybe 7? Sometimes if I was there for a check in and they saw the beginnings of something, they would do a quick laser there.

Laser, to my knowledge, works for things close enough to the surface. So things like amother royalblue is describing are going to get sclerotherapy.
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