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-   -   23 yr old female Vascular Malformation or Hemangioma? (http://birthmark.org/board/showthread.php?t=456)

angelia12 01-07-2004 01:16 AM

23 yr old female Vascular Malformation or Hemangioma?
 
I am a 23 yr old female and last year noticed something on the right side of my neck. It will expand when I hold my breath and breath out of my nose. I had an ENT diagnose it as a Hemangioma and an enlarged arterior jugular vein and told me I dont have to do anything about it. The problem is I've read that only infants have hemangiomas and this never even occured until I was 22. Now I'm not sure who to see to get an accurate diagnosis. If any adult who is reading this has dealt with this or has any info on this or know of any doctors in the Midwest that might be familiar with this, Please, let me know. The only info. I've found regarding this is for children and infants.

Lise 01-07-2004 03:40 AM

Re:23 yr old female Vascular Malformation or Hemangioma?
 
Hemangiomas are supposed to appear in the infancy. When a vascular birthmark appears later in life, it is rather a vascular malformation, either venous or arteriovenous. I have an arteriovenous malformation of the lip. It appeared when I was 38 yrs old and at the time it was diagnosed as a H. It grew very slowly and steadily until I had no choice but to have it surgically excised 20 years later -- that is in 2003. Some vascular malformations grow fast, others slowly. Most doctors will recommend the "leave-it-alone" solution because treatments seldom bring good results and the tumor recurs.

But the word "hemangioma" is also used as a kind of generic word (like the word "tumor"). Even at the Vascular Anomalies Clinic of Little Rock I was admitted, says the record, for an "excision of lip hemangioma".

Anyway, you should get the opinion of a doctor who knows about VM (see the link "Find a Physician" on this site): the vast majority of doctors are quite ignorant on the subject.

I hope this can help you a little, but you need an expert consultation, don't stop your inquiring and searching.

Take good care of you.

Lise

Beatrice 09-21-2005 06:30 AM

Re: 23 yr old female Vascular Malformation or Hemangioma?
 
Hello,

I'm new to this list and find this information helpful.. So glad you're all here sharing your stories.

A week ago I had minor surgery to remove what I now realize was probably a VM from my lower lip. I'd had it for years, starting as just a blue spot (noticed at age 14 and I'm now 38) but in recent years it grew. One doctor said it could just keep growing and the doctor who removed it said he thought it was probably hemangioma. He also said he thought they got it all but of course it started to bleed when they cut into it so he couldn't see completely, but if it came back he'd take it out again. YIKES!

I'm still recovering so my lip still looks a little bluish and I can't tell if it's completely gone. The info on this site said "partial removal is not recommended" cuz it will grow back (in a few weeks??). How do you know how deep it is/was? What other kinds of treatments are there and is it always associated with some kind of pain or syndrome or illness? I don't really understand the implications of this and am in Toronto, Canada wondering about informed doctors here (none on this list).

Any info that any can pass on would be greatly appreciated. Thank you!

Beatrice




KristieinStMarysGA 09-21-2005 02:49 PM

Re: 23 yr old female Vascular Malformation or Hemangioma?
 
Hi Beatrice,

I too have a VM, mine is throughout my left elbow(including in the joint) and bit of the forearm.

I had sclerotherapy done with a doctor in Colorado. I found out the depth of it through an MRI, Angiogram and CT Scan.

From what I understand it is NOT always associated with syndrome/illness, but some cases can be painful, as in my case. There are other options other than surgery, which is not the best option due to the fact that they will/can come back wether it be a week,a month,a year.

There is a great site on MSN it's the vascularbirthmarksupport .. I cannot find the complete address but I know if you google it you can find the link and also someone on here might post it. There is a mom from Canada in the ONtario area who son recieves treatment at a hospital in Toronto..hopefully she will see this, but she is also on the MSN site

Hope this helps

Kristie

juliemn 09-25-2005 05:39 AM

Re: 23 yr old female Vascular Malformation or Hemangioma?
 
Beatrice,

What you read about partial removal is correct.* If the entire malformation was not removed it can grow back.* In fact, it some times can grow back more aggressively.* Please don't take that as a scare...just want you to be totally informed.

A couple of questions:

Did they do any imaging or testing before removal such as an MRI/MRA, ultrasound, angiogram(usually reserved for AVM and VM)?
Was it removed by a surgeon familiar with vascular malformations?

Vascular malformations are not always associated with syndromes.* In fact, the syndromes associated with vascular birthmarks are usually the exception..not the norm.* You will find several people and parents here who deal with these syndromes...as we generally have an overwhelming amount of questions. :)

If you're at all questioning the results of your surgery, I would definitely seek the advice of a vascular anomalies specialist.* It might not be a bad idea to start right here at the VBF site.* There are several ask the expert doctors available for questions via email.* I've used this myself, and received a reply within a day.* In fact, I'm still communicating with the doctor on a fairly regular basis.

If you have any questions, feel free to email me

Julie


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