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-   -   AVM on face (http://birthmark.org/board/showthread.php?t=139)

whitby 03-23-2003 04:31 PM

AVM on face
 
My daughter is 3 1/2 years old and has had a VM on her jaw line since her birth. She has now had 5 alcohol injections at Sick Kids Hospital in Toronto.

It appears to have gone down in size a little but it now appears to be creeping across her chin and lips. Is there surgery that can be performed to remove these? She has gone through a lot at such an early age and we would like quicker results.


connorsmom 03-25-2003 03:52 AM

Re:AVM on forehead
 
My son was just diagnosed with a venous malformation at the Childrens Hospital in Arkansas. Connor is 20mos and was born with a large bluish birthmark on the middle of his forehead. His pediatrician and a local dermatologist insisted that it was a Hemangioma and would fade or disappear over the next few years. After reading all the info on these types of birthmarks I was not convinced that it was a hemangioma, but a vascular malformation.

We met with Dr Waner and his colleages and they suggested surgically removing Connors birthmark, which would leave a scar on his forehead. I was not prepared for this news. I simply thought that Dr Waner would suggest laser or pulse dye treatment. I was in such shock that I couldn't think of any questions at the time other than how long would the surgery take?
We set a tentative date for July to remove the birthmark, and I'm still wondering if this is the right thing to do. Dr Waner is an expert in this field and I know if we go thru with the surgery he is the one I want to do it. Dr Waner told us that Connors type of malformation will only get larger and possibily spread. Right now Connor's bangs hide the birthmark. But, I certainly don't want it to get any larger.
Does anyone else have or know someone with a similar VM and have had it surgically removed?

Diana (Connorsmom)


mamalamb 03-25-2003 05:26 AM

Re:AVM on face
 
Hello Dianna,
I know the initial consultation can be overwhelming. I do not have personal experience with a VM, but have researched vascular anomalies. No expert.

I think you can trust Dr. Waner. He has vast experience. I have consulted with him and met him personally. I know he does not recommend surgery to everyone that walks through the door, only if that is what is needed.

What I know about VM's and the treatment options has to do with the depth and location of the vessels involved.

The ND:yag laser can be tried on superficial parts of a VM, however deeper lesions require surgery. I do not think that PDL's are normally used or that effective on VM's.

Surgical removal is the only options for deeper lesions.

Embolization is another options and is very risky. It is not recommended in most cases and normally only used on those with larger lesions on the limbs.

I have known several with VM's removed. One young girl has had a combination of both laser and surgical removal of her VM. The patients I have met over the years have had Dr. Waner remove theirs.

I cannot comment on the medical necessity of removing VM's or if it is acceptable in leaving them alone. I have heard it is highly recommended to have them removed but don't know the reason why. I think I have seen pictures that they can grow very extensively causing deformity of the face. I would seem that more problems might occur in the future.

It would be nice if someone else could make the decisions for us, but they cannot. You are the only one who can decide if the decision is right or not. If you are confident in the doctor and the information you were given then your decision should be easy. You should not hesitate to call him back with any concerns. You are your son's advocate so continue to educate yourself.

Best wishes on the upcoming surgery.

Gayle 05-13-2003 08:46 PM

Re:AVM on forehead
 
Quote:

Originally Posted by connorsmom
My son was just diagnosed with a venous malformation at the Childrens Hospital in Arkansas. Connor is 20mos and was born with a large bluish birthmark on the middle of his forehead. His pediatrician and a local dermatologist insisted that it was a Hemangioma and would fade or disappear over the next few years. After reading all the info on these types of birthmarks I was not convinced that it was a hemangioma, but a vascular malformation.

We met with Dr Waner and his colleages and they suggested surgically removing Connors birthmark, which would leave a scar on his forehead. I was not prepared for this news. I simply thought that Dr Waner would suggest laser or pulse dye treatment. I was in such shock that I couldn't think of any questions at the time other than how long would the surgery take?
We set a tentative date for July to remove the birthmark, and I'm still wondering if this is the right thing to do. Dr Waner is an expert in this field and I know if we go thru with the surgery he is the one I want to do it. Dr Waner told us that Connors type of malformation will only get larger and possibily spread. Right now Connor's bangs hide the birthmark. But, I certainly don't want it to get any larger.
Does anyone else have or know someone with a similar VM and have had it surgically removed?

Diana (Connorsmom)



Gayle 05-13-2003 09:35 PM

Re:AVM on face
 
I hope that you have seen Dr. Waner again and that you have consented to have this removed while he is still young. I was born with a venous malformation which has progressed and has now become a life threatening issue. Good luck with everything.
Gayle

semtech 05-16-2003 10:17 PM

Re:AVM on face
 
My son 4 years old has a VM on his cheek. We are scheduled for staged sclerotherapy at boston childrens hospital with Dr. Burrows. We do not know if this is the right treatment. what are the side affects of this treatment. Any info will be helpful.
THank You


MomTo3Ds 06-07-2003 01:43 AM

Re:AVM on face
 
For the past week I have been trying to figure out what my daughter's birthmark is, since the doctors don't seem to know. I believe it is either a venous or arteriovenous malformation but, I haven't been able to find any pictures to compare with. Do any of you have one you could send or, I could send one of my daughter for you to compare to. The description fits but, I would like the image comfirmation. I am waiting on some doctors to respond but, it seems to take so long - I want to know now! :o) Also, does anyone know the difference between avm and vm, is there a way to tell by looking or feeling.
Thanks, MomTo3Ds

Seanette 08-05-2003 11:31 PM

Re:AVM on face
 
My daughter has Venous Malformations along with AVM's in her brain. I'm not sure what the difference is either and would love to know too.

Alex is being seen by Dr. Waner in AR she has had 26 surgeries in OR and has been misdiagnosed most of her life. Dr. Waner recently did some lasering and we plan on going back on Sept. 5th for more lasering down her throat and reconstruction of her nose. Alex's VM cover most of the left side of her face along with the AVM's in her brain.

I would love to email or chat with other parents.

Sincerely,
Seanette

MomTo3Ds 08-17-2003 08:37 PM

Re:AVM on face
 
Hi Seanette,
I'm sorry to hear about your daughter.
I have a question, how did they determine she had the AVM? The doctor our daughter is seeing just felt her face and determined that the arteries aren't involved and I'm concerned that isn't enough.
Right now we are trying to "play along" with our insurace company to please them and are hoping to get the ok to see Dr. Waner.
Does your daughter have any pain or other complications from the malformations?
Our daughter doesn't but, I feel like since she has had it her whole life, maybe she doesn't realize it shouldn't feel that way. The dr. we are dealing with says there's no medical reason to treat it, only cosmetic and that worries me too.
Thanks and good luck,
Amy

Seanette 08-23-2003 11:54 PM

Re:AVM on face
 
Amy,

I didn't think anyone was ever going to respond to my post. I apologize for not checking sooner.

I just recently found out that Alex has what is called a Extensive Sinus Pericranium with a hole in her skull. I'm still not certain if the lesions on the left side of her brain are AVM's or not. I'm hoping to find out soon.

I would recommend that your daughter have an MRI of her skull along with a CT. The MRI will show how the blood vessels are in the skull and face and the CT will show if she does have any lesions if they are doing anything to the skull area.

Alex will have surgery in Sept. in AR and then in October we will have to travel to NY to see Dr. Berstien to help with Alex's intercranial issues.

I'm holding onto my faith that everything will work out and I will be praying for your daughter too. If you'd like to e-mail me personally my e-mail address is rsmith@actionnet.net I can scan a picture of Alex if you'd like to.

Many Blessings,
Seanette


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