VM Support?

[kelly.g.meyers]

My daughter, Addison, has a capillary malformations of her eyelid, face, lip and lower spine; and midline vascular malformation(s) on her forehead and nose. From an MRI (we were originally concerned they were hemangiomas and needed to rule out PHACE) we also know that she has some intracranial vascular malformations. We have not been able to find a diagnosis to link all of her malformations, but are being watchful for a Sturge-Weber "like" syndrome.
I felt a great sense of community the first month of her life (she's now 2 months) when we thought that we were dealing with hemangiomas, but have struggled to find something similar now that we are in the VM community. So, hello to everyone out there, and it would be great to connect and hear about others experiences, treatment, etc.
-Kelly

[AnnaMichele]

Hi Kelly!

My name is Anna - I'm 24 years old and was born with a venous malformation on my right cheek, neck, ear, & tongue. Growing up it was very difficult for my parents to find others who had shared similar experiences! I was passed physician to physician with no one knowing what I had or what to do. I finally found Dr. Waner in Little Rock, Arkansas when I was in high school and he was the first person who seemed to know exactly what to do - it was a wonderful relief!! I've had several laser treatments, sclerotherapy, and a large debulking surgery - it's been about 5 years since I've had anything done because my schedule in grad school is so hectic to find time for treatment.

I'm actually getting my PhD in health communication and working with NOVA and Cincinnati Children's Hospital - spending time with children who have birthmarks and their parents. It's been the most rewarding experience and it is a wonderful way to bring awareness about it. I'm glad to hear you've had a positive experience so far.

I'd love to chat more if you have any questions for me!

Anna

[kathi]

I am an adult female with a vascular malformation in my arm that goes from my elbow almost to my fingers. It tends to swell up and down. It is very painful and I see a pain clinic for treatment. I only have partial use of that hand. I was treated at Cinti Childrens by Dr. Neil Johnson and had 5 sclerotherapy treatments, a tendon transfer (I have had nerve damage).7 surgeries total. They said there was no more treatment available for me-mine was too large. I just get a MRI to make sure it is stable and see a hand Dr every 6mo. I now have a infant grandaughter who appears to have a tiny hemangioma on the top of her head.

[Karla Hall]

Kathi
Welcome to NOVA.
I wanted to touch base about your grandaughter just to make sure you know that what you have is very differnt from a small hemangioma. There should not be any similarities to the course the hemangioma will take to your malformation.


I am sorry you continue in pain. If there is anything we can do to offer assistance please let me know. Anna who replied above knows first hand... you may want to reach out to her as well.

Karla

[uncgrad2009]

Hi Kelly!

My name is Anna - I'm 24 years old and was born with a venous malformation on my right cheek, neck, ear, & tongue. Growing up it was very difficult for my parents to find others who had shared similar experiences! I was passed physician to physician with no one knowing what I had or what to do. I finally found Dr. Waner in Little Rock, Arkansas when I was in high school and he was the first person who seemed to know exactly what to do - it was a wonderful relief!! I've had several laser treatments, sclerotherapy, and a large debulking surgery - it's been about 5 years since I've had anything done because my schedule in grad school is so hectic to find time for treatment.

I'm actually getting my PhD in health communication and working with NOVA and Cincinnati Children's Hospital - spending time with children who have birthmarks and their parents. It's been the most rewarding experience and it is a wonderful way to bring awareness about it. I'm glad to hear you've had a positive experience so far.

I'd love to chat more if you have any questions for me!

Anna

Anna, I can relate! (maybe not to the degree with all of your surgeries and all of that) I was just recently (in April) diagnosed with an extensive vascular malformation on my left knee, thigh, and gluteus muscle. I also may have a lymphatic malformation on my left side as well. I, not unlike many others, had no knowledge of this disorder until it became symptomatic last winter. I still remember the rather lengthy and extensive work up to the diagnosis. Countless lab tests, MRIS, angiograms, CT Scans, and many other tests. My malformation affects my mobility and often leaves me having issues getting around. I've had a few treatments at Children's Hospital Boston and have been able to find a doctor here in the DC area. I'm really interested to hear more about your research! I'm often trying to learn/diagnose myself!

Phil