Venous Malformation - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Additional Resources > General Resources

Reply
 
Thread Tools Display Modes
  #1  
Old 03-11-2003, 08:02 PM
shelley shelley is offline
Junior Member
 
Join Date: Mar 2003
Posts: 3
Default Venous Malformation

My son Zachary was misdiagnosed with a hemangioma. At 3 1/2 years old he had his first MRI. It was discovered that he actually has a Vascular Malformation. I currently live in Honolulu, HI, and haven't seen any recommendations for doctors in this area. If anyone can help it would be greatly appreciated. Thanks.
Shelley Delamarter
Reply With Quote
  #2  
Old 03-11-2003, 11:47 PM
hankbartenbach hankbartenbach is offline
Senior Member
 
Join Date: Oct 2002
Location: Nebraska
Posts: 538
Default Re:Venous Malformation

Hi Shelley

My name is Hank. First I have a question. How can you tell a hemangioma apart from a Vascular Malformation?
Why I am asking is because I was told that when I was a child my mark was a hemangioma and after I finished puberty there was not chance that my mark was going to change so it became a Vascular Malformation.
Next month I am going to a Vascular Malformation specialist in San Fransico to see if she can help me make my marks go away. I am 20 years old and I am ready for a change.

Second if you can not find a physician in your area try to either go to a search engine and and put in physician or go to www.physician.com you might be able to find a doctor there. One other possablity is flying to CA. There are doctors all over in the state. Any major city.
Or if you want to state around the island go to a phone book of the biggest city out there and look under pysicians for dermatology or plastic surgrey. If they can not help you maybe they can point you into the right direction.

Well I would like to hear back from you about the first part of my message. If you have any questions you would like to ask me please do so. I have lived with this mark my whole life and your son and you and your family do not know what your son is going to go thru growing up. I can tell you for starters support him as much as you can, and remember it is not your falt what happen to him. It is a natural birth defect. I have had to live with it and if you want any advice I am here for you.

Talk to you soon.

Hank B
Reply With Quote
  #3  
Old 04-05-2003, 04:16 PM
Cuety
 
Posts: n/a
Default Re:Venous Malformation

Hi to both of you,
My name is Stef and I have what you call Artereo venous malformation. I am also 20 years old and having my first baby.
I have had a few complications since I have been pregnant with it, but not serious. When I was born, the doctors told my mom that my whole leg was purple because I was leaning on it in the womb. After a few days and still the same, my mom demanded another explaination, so they told her that I had Hemangioma also. I think that a lot of people are misdiagnosed. When I was 17, I went onto the computer and with the help of some other people I diagnosed myself, and then went to Bostons Childrens Hospital and they confirmed it.
I have'nt met a doctor yet who has not said that I have the most severe vascular malformation they have ever seen. My birthmark starts from my toes and covers my entire leg to my back. The color changes from red to deep dark purple, depending on the temperature. The reason why it looks so severe and so dark is because the vessels are in my second layer of skin, making it more noticible. I have been to many doctors and still I haven't had any success, but I still smile and I am happy, I live with it everyday. Yes sometimes I hate when people stare, but I am a beautiful girl and one purple leg isn't gonna stop me. I hope to be on this board and encourage people just like me. I know how it is and I enjoy helping and talking to other people who are desperate for answers. Well write back anyone, I am here to help and talk. :-*
Reply With Quote
  #4  
Old 01-20-2004, 12:03 AM
kathyizkool
 
Posts: n/a
Default Re:Venous Malformation

My daughter was also misdiagnosed when she was born. She was born with a large purple mark on her forehead. The hospital pedatrician thought she had a bruise. Her regular pedatrician later said it was hemangonoma and told me to simply watch it. Not comfortable with this, I took her to see Dr. Frieden, a pediatric dermatologist specializing in vascular birthmarks, at UCSF in San Francisco. Piper had a CT-Scan, which confirmed that she has a venous malformation. She is now 19-months old. Later this week she will go back to UCSF where she will be seen by the Vaccular Anomolies Clinic Team (Dr. Frieden, a pediatric radiologist, a pediatric plastic surgeon, etc.) who will discuss Piper's treatment plan. I am impressed with UCSF so far. I think the interdisciplinary team approach seems wise, yet I'm a bit nervous, too. I hope you were able to find a doctor who can help you. If so, let me know what happened. Thanks--Kathy
Reply With Quote
  #5  
Old 01-28-2004, 08:43 AM
Just Harmony
 
Posts: n/a
Default Re:Venous Malformation

We are also in a similar situation. We have a unsure diagnosis. My daughter is 14 months old and has either a hemangioma or venous malformation. Hers is located on the outside of her left leg. It is lump about the size of half of a cherry tomato, located under the skin, but it doesn't appear to be in her muscle. It is colorless, though I notice she seems to get bruises around it.

I think I noticed the bump when she was about 10 months of age. Though, I could very well be wrong. I may have noticed it much earlier and just dismissed it. It really didn't seem like anything more than a bump. I thought it was from a fall or bump into something and dismissed it. It wasn't until her 1 year checkup that I brought it to the attention of her pediatrician. He did an xray and referred us to a pediatric surgeon with no information other than "it's not in the bone."

The pediatric surgeon examined it and sent us off to have an MRI. That was last week. According to him, the results show that she has either hemangioma or a venuous malformation (his exact words though were lympahngioma). He says that he is 90% sure that it is one or the other. However, to make an accurate diagnosis, he'd like to do a biopsy. While doing the biopsy, he can come out and tell us what it is and we can make the decision on the spot whether we're going to remove it or leave it. The entire procedure can be scheduled as early as this Friday, though my husband and I are holding off for now so that I can research this a little more.

Because of the location of this, it is highly likely that I overlooked it for months, thus making it a possibility of being a hemangioma. However, with all I've read so far (I've now put about 12 hours into reading about this), it would seem to be to be a lymphangioma. Fortunately, for our daughter, it is not very noticeable.

Is an unsure diagnosis common? Or, might we have a misdiagnosis? Is a biopsy necessary to determine what this is? Or, rather than doing the biopsy, should I just tell him to remove it first and biopsy after the fact? I'm trying to keep medical intervention to a minimum, yet also receive whatever care may be necesary.

Finally, reading others' experiences, it seems as if many cannot receive surgery so easily or quickly. For us, it seems as if it's too quick and that makes me wonder. The surgeon didn't seem too concerned about this and from his comments, he's removed these before. However, I have no idea how many he's removed and what his rate of success is.

So many questions. I do hope some of you might be able to offer some suggestions.

Thanks in advance,

Just Harmony
Reply With Quote
  #6  
Old 08-13-2004, 07:19 PM
kind
 
Posts: n/a
Default Re:Venous Malformation

My daughter has a vascular malformation of the diaper area internal and external,when she was born they thought it was a hemangioma with a mongolian spot,When she was about 3 months old i brought her to the dr i was freaked cuz it seemed to grow, well her doc was out of the building and being at the hospital the dr on staff asked me if i thought she had been sexual molested. I was horrified the dr never read or even looked at her chart he made a assumption. When i told him that she had it from birth he looked and said oh well they usually don't grow. Took 3 yrs i finally found a female peds dr that knew it was a problem and referred me to Dr. cohen at johns hopkins, He was surprised when the internal radiologist said that she needed a embolization after the mri revealed that it was a deep a.v.m.
Reply With Quote
  #7  
Old 08-13-2004, 07:41 PM
nickbar nickbar is offline
Senior Member
 
Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
Default Re:Venous Malformation

I am so sorry that you had to deal with a STUPID comment like that. Why are they so clueless. My son's h. has caused some bone thickening.... so he had an MRI...the radiologist actually said to me "did you drop him on his head"... I should have freaked out... but I explained that he has a hemangioma and it has caused bone thickening HYPEROSTOSIS doc. Like, why am I teaching them.... ignorance shows no boundaries. He actually thought the RED HEMANGIOMA was from trauma. I guess they see all kinds of horrific things...but what a comment. Geeeeeeeeeeez.

I hope you are finding the help your child needs now. Cohen is a good doctor, but I think that sounds right about embolization. I would encourage you to ask this question about embolization with Linda Shannon (president and founder of the VBF. her email is hvbf@aol.com) she can tell you more about it. Also, post under AVM on this page and others can share there experience on treating avm.

Corinne
__________________
Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
Reply With Quote
  #8  
Old 08-16-2004, 11:43 PM
nickbar nickbar is offline
Senior Member
 
Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
Default Re:Venous Malformation

I sent you an email!!! I heard back from Linda on where you should go.

Corinne
__________________
Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
Reply With Quote
  #9  
Old 08-21-2004, 01:50 PM
kind
 
Posts: n/a
Default Re:Venous Malformation

Thank you corrine, I sent her a email back. describing my daughters lesion.
She goes to see her interventional radiologist on monday.I will keep everyone posted.
Reply With Quote
  #10  
Old 08-21-2004, 06:12 PM
nickbar nickbar is offline
Senior Member
 
Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
Default Re:Venous Malformation

GOOD LUCK.

Yes, keep us posted.

Corinne
__________________
Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
possible venous malformation in finger cjsmom AVM Help and Resources 14 05-27-2013 03:56 PM
Venous Malformation support blamb AVM Help and Resources 12 03-24-2013 01:12 AM
Venous Malformation gina0291 AVM Help and Resources 14 09-30-2010 01:52 PM
venous malformation of perineal area sissy Adults Living with Birthmarks 1 05-17-2006 11:14 PM
Multi-focal Venous Malformation Gayle AVM Help and Resources 9 11-11-2003 03:49 PM