Venous Malformation under eye

[nickbar]

I know it is hard to read information and not freak out! But, you sound like you are on top of this and seeing the right type of specialists. If something doesn't sit right with you or you ever feel unsure...don't hesitate to ask or seek other opinions. Hopefully you have found specialists that have dealt with this very often.

Please keep us updated on the progress.

Corinne

Tina-

Hello, my name is Shelley. My son, Zachary, who is 7 was also misdiagnosed at birth with a hemmangioma. It looked like a bruise that went from his temple area to and around his eye. It took over three years before he was properly diagnosed with a venous malformation. From birth to about his fourth birthday there was no change to the presence, besides the scarring from a laser surgery due to his misdiagnosis. After four, it began swelling and he developed little hard marble like lumps (later identified as blood clots) under his eye and all over the left side of his face. The area by his tear duct has veins that actually protrude out of his eye. The lower eyelid swells and gets extremely lumpy. We were blessed to be seen by Dr. Lisa Buckmiller at Arkansas Children's Hospital. She has performed two laser treatments on his eye area. They helped tremendously. He has also been through two sclerotherapy treatments to control the growth of the rest of the face. My son has always been accepted at school, but as he has been getting older he is having more issues with the kids at school and with his own self-esteem. His malformation has been extremely aggressive. I would really like to talk to you some more, I think it would be great for Zach to know there is someone else out there going through the same thing. Talk to you soon!

[hankbartenbach]

Hi Shelley,

First of all welcome to the group.

I have heard a lot of good things about Dr. Buckmiller you are in very good hands.

I have facial PWS and am going blind from detached retinas and other conditions.

I know exactly what your son is going thru. Even though I am 23 I have been down that road already. For a look into the future it will get better. Elementry school was always the hardest part of school. After that the kids will start to grow up a little and will except your son for who he is if you stay in the same school district. I would say moving around would be the hardest thing for a child in your sons position. (just something to think of if it ever comes up). As far as the self-esteam thing at school, teach your son to let the comments role off his shoulders or just ingore them. The comments, pointing, and staring has been something I have had to live with my entire life and will for the rest of it until technology gets better. Talk to your son's teacher(s) and see if they can provide him with a little more positive feedback on a one on one bases. Not in front of the other children that will only make him stand out. You do not want them to treat him any different from the other kids because it will make him feel like an outsider. I have seen it with other people with a vascular birthmark.

If you are interested I did write a paper on social issues. It is about things that worked for me and things the might have if my parents would have done it. It is a mixture of my childhood education and psycology classes I took in college and my personal experiences put together. The paper is on my website at www.hankspws.com at the bottom of the page.

I hope everything goes well with your son's treatments.

Hank

Hi this is Tina in NY but for some reason I couldnt log back in.. even with a new password! lol anyway...

Megans eye started to have 2 bumps on it.. say after Halloween. One bump disappeared last week and the other looked like a lump w/ a blood pimple on it. I had her put a warm compress on to release the blood b/c it was getting bigger and I didnt want it to break open i nschool. Long story short, it bled a little bit and then it opened up in school. Dealing w/ the school nurse is another issue, and she makes me feel like a bad parent suggesting "taking her for medical treatment". Anyway.. I went to Dr. Geronomus who was doing laser on her up until April when our insurance did not pay for it. Being I cannot afford it and it was looking fine up until recent, I hadnt gone back. I rushed her to his office yesterday and he suggested I see Dr. Waner or highly recommended Dr. Fay which may not take my insurance. (DOes anyone know what insurances they DO take? and if surgery is accepted). Dr. G said hers is a highly unsual case and that Dr. Fay would probably be the one to better treat the situation. He said it looked like a cyst on her eyelid and needed to be surgically removed and therefore he wasnt an option for us anymore. I am very upset. Megan is upset to know she needs plastic surgery. I would love to post pics of megan but she is a little self concious about her looks but I will try to take a pic or 2.

Any advice? any words of encouragement on either doctor? Dr. Fay only comes to NY 1x a month.. i found out from his office in Boston.
Surgery meaning they will CUT it out?? I'm so confused. I did email Dr. Fay on here.

Tina

[Tina In NY]

Hi Everyone, (Megans mom here)

I have been M.I.A. for quite awhile. We went to see Dr. Fay and Dr. Waner on Thursday. Megan has her surgery scheduled for April 17th. Both Drs say that her V.M. is just contained in that area and she has enough extra skin under her eye that it will look perfect. I feel like jumping for joy, although Megan, at age 11, is scared.

Can anyone tell me about the procedures? any kind. Do they keep you in the hospital? will she come home that day? I forgot to ask these important question b/c I think I ws just so excited to get it scheduled!

Thank you!
Tina

[nickbar]

Hi Tina,

Happy to hear you have a date (my Nicholas' b-day). Don't hesitate to contact the nurse that schedule the appointment (Corey, Janna?) to have the questions answered specific to her case.

Good luck and keep us posted.

Corinne