Vascular Birthmarks Foundation Forum

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-   -   Venous Malformation under eye (http://birthmark.org/board/showthread.php?t=1675)

Tina In NY 11-22-2005 03:54 PM

Venous Malformation under eye
 
My 8 yr old daughter went to Dr. Geronemus yesterday for treatment of what we were told was a hemangioma (since birth). It seems she has the hemangioma plus a VM under her lower eyelid. She is at the age where she is upset and feels she looks like a freak.

Dr. Geronemus did laser surgery to help w/ the hemangioma. He said in time we'd need to see someone else.

Can anyone tell me if this VM will affect her seriously with her eyesight or her brain or whatever? i'm freaking out since we thought it was a hemangioma all this time.

Thank you
Tina

KristieinStMarysGA 11-22-2005 04:22 PM

Re: Venous Malformation under eye
 
Hi Tina,

Welcome to VBF! You will find great support and advice here.

I have a VM throughout my left elbow/forearm. So I know a little about VMs and how troublesome they can be. I cannot offer any advice on the eye issues, related to the VM. But I do know that some moms on here will respond. And that your daughter is in good hands.

If you are still unsure, seek a second or third opinon, do what you need to do until you are comfortable with the diagnosis and treatment plan. At least in NY you are surronded by some of the best docs in the field!

Good Luck!
Kristie

Tina In NY 11-22-2005 05:18 PM

Re: Venous Malformation under eye
 
Thank you Kristie for your response. She was just diagnosed yesterday and I'm still upset. Being told it was a hemangioma her whole life and knowing I could've done more for her in the earlier years, I am somewhat beating myself up about it. My husband said we talked to 3 drs.. we only listened to what they told us.

I am glad I am here for support. Thank you. :D

hankbartenbach 11-22-2005 06:32 PM

Re: Venous Malformation under eye
 
Hi Tina,

Welcome to the group.

I am Hank 23 with PWS/SWS I also have a AVM in one eye and a choroidal hemangioma behind the other.

Since you are in NY I would recommend you going to see Dr. Waner. He is my doctor for plastic surgery on my PWS. But he also sees people with VM's among several other conditions.
He has eye doctors that work with him every once and a while like Dr. Aaron Fay. Maybe they can help your daughter's condition.

You can find all of Dr. Waner's office info in the resource section under find a physician then go to NY.

I hope this helps.

Hank

KristieinStMarysGA 11-22-2005 07:38 PM

Re: Venous Malformation under eye
 
No Problem Tina :)

I can tell you that I was first told the "thing" in my arm, which is what we called it since I was about 8-9 years old this past year was a hemangioma. Which I have learned that adults do not have! As they involute (fade/go away) by about the age of 10. So do not blame yourself for the way you dealt with it. Many doctors still are unsure of wether it's a VM or Hemangioma, please do not blame yourself. Like your husband said you did what the "experts" told you!

On the main page is an ask the expert section and I believe Dr.Fay is on there, ask him and he will answer the best he can.
Also do you have a pic you can post or e-mail so I can take a look at the h/vm? If you don't want to no big deal.
There is another great group on MSN, it's the vascular birthmark support group with outsanding moms and some dads on it. I don't have the direct link but a google search will lead you to us!!

Good Luck!

Kristie

nickbar 11-26-2005 09:21 PM

Re: Venous Malformation under eye
 
I agree with Hank... it is very important that an experinced ophthalmologist is also part of her evaluation/treatment.... Dr. Waner is a great route along with Dr. Aaron Fay out of Boston. Dr. Fay often travels to NY to work with Waner. Please try contacting Dr. Faye through the "ask the expert" on the front page as well.

Corinne

crissy 11-29-2005 07:10 AM

Re: Venous Malformation under eye
 
When we first discovered my husbands AVM's last year we were very lucky that our Vascular surgeon wasn't willing to touch it himself, but he was willing to look in on it and he referred us to Dr. Yakes in Colorado. My husband has multiple AVM's throughout his left arm. Dr. Yakes explained to us that it may take up to 4 years, with many treatments, but he would help. He explained how surgery can only make it worse. Many doctors will elect to do surgery and this only spreads the AVM's. Open surgery is not a good thing on these birthmarks. Please do not allow your daughter to go under the knife. Dr. Yakes invented a technique 20 years ago called alcohol embolization that he uses on my husband. He has trained others around the world, including someone in Boston. Contact Dr. Yakes office at the Swedish Medical Center in Englewood Colorado and ask for some information before you make any decisions. I met one of Dr. Yakes patients outside of the hospital while I was waiting for my husband to wake up. He had AVM's covering the right side of his face. Spanning from his mouth to his ear. He said he had been diagnosed in 1980. Throughout the next 10 years he had multiple surgeries and everytime it returned, and it spread farther. He has now been seeing Dr. Yakes for occasional treatments for the last 5 years. He showed me a picture. What a difference!

louanneross 12-16-2005 03:55 PM

Re: Venous Malformation under eye
 
Hi Tina

My son has VM's around the orbit of the eye, his cheek and his lip (he's 4yrs old). An MRI scan is the best way to see the full extent of VM.

All the best
Louanne

jose 12-19-2005 03:04 PM

Re: Venous Malformation under eye
 
Hi Tina,

How is your daughter doing now? How are you feeling now that you have had some more time to digest the information?

My son is 10 years old and was diagnosed with numerous different things before we found out that he has multiple VMs throughout his right neck, shoulder and throat. It took 4 years of searching (ages 5 to 9) to get the right answers. He started sclerotherapy treatments this past year in March and has had 3 so far. His "symptomatic" VMs are being treated in this way...by symptomatic I mean the ones that are causing him pain (due to clots), discomfort and are cosmetically an issue as well.

What is known about VMs is that they tend to grow when your child grows, especially during times of hormonal change, as well as when they are sick. We kicked ourselves for not being more aggressive with seeking out answers over the 4 years of questions, even though the poor kid saw tons of doctors, for if we had found answers sooner, his treatments could have been less since the VMs would have been smaller. However, the sclerotherapy is doing wonders for him (he has about 2 more treatments to go) and he is feeling much better. We are confident that the treatments are being by the right doctor at the right hospital (Toronto, Canada) and are at peace with things now. I am grateful that we found our answers prior to the onset of puberty....a difficult age at best, but not fun I imagine if you are in more pain and discomfort, and feeling more selfconscious about your appearance than your average kid.

Hope all is well with you and that you are finding the answers you need.

Feel free to join us at the other support group (I am sorry, I don't check the posts here very often) at http://groups.msn.com/vascularbirthmarksupport. Corinne, the manager there, is wonderful, and I notice she has replied to you here as well!!

Take care,

Josť

Rosario 01-05-2006 07:23 PM

Re: Venous Malformation under eye
 
Hi. My daughter Amara is 3 1/2 months old. She has just been diagnosed with Arteriovenous Malformation. She has it on her lower right eye lid. Are these treated the same as other avm's on the body? We are going to see a pediatric opthamologist tomorrow and then on Monday we are going to see a pediatric plastic surgeon. i have tried to look up this condition online before I see these doctors but there really isn't a lot of helpful information. I am so nervous about this and terrified the situation will worsen - especially after everything I have read about. If anyone has any information I would greatly appreciate it.


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