LOOONG post, and a question about pregnancy - Vascular Birthmarks Foundation Forum
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  #1  
Old 10-07-2003, 09:33 PM
christielee21
 
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Default LOOONG post, and a question about pregnancy

hello everyone! i've come across this website before in the past, but never thought about checking out the discussion board. i'm glad i did, because i bet some of you/ all of you could be helpful!

first of all, i'm christie, i'm 18, a freshman in college, in Missouri.

i was born with my "blue spot" (it's a charming term, don't you think?). it started as just a spot on my left foot (on the inside heel part by my ankle), and slowly spread into a large venous malformation. through the years, it has spread across the bottom of my foot (these are very small clusters, not at all like the large one on my ankle/heel area), up my leg (again, very faint spottings), on the back of my thigh, and hmmmm....how to post this on the internet......into more private regions. :-X i even have a tiny blue spot dot on my shoulder... so i guess it extends to there.

what does my blue spot look like? hmm. it's blue. it's just a puffy bunch of veins. the concentrated one on my foot is bumpy and very textured to the touch.. it's usually tight (full of blood/pressure) not soft or gushy, if that makes ANY sense, lol. the smaller ones are just faint, flat little blue patches more than anything... they don't stand out. (sorry for my lack of terminology!) the "private" one is more of a mix b/w the patches, and a bit of a larger concentration.

i went to a specialist about it when i was younger, and he said it was a hemangioma. my family doctor knows nothing about it, but thinks it's "cool."

about a year ago, i had a doctor from dermatology check out my blue spot. she said i had multiple venous malformations involving mainly the left leg, with scattered satellite lesions. she wants to do an MRI, then see me again, but i'm in college and don't have enough $ for that, so here i am!!

i have been a very active person. i was captain of both the cheerleading and dance squads in high school. my blue spot is often painful, especially mornings after i'd had a very active day previously. sometimes it takes an hour to "let my foot warm up" before i can walk with ease. but i've never really had a problem with my "problem." it's not that big of a cosmetic issue, because the ones on my leg are faint, and the one on my foot is easily covered. none of the doctors i've seen have suggested surgery.

my only real concern with my blue spot is an extremely emotional one for me, and i'm just hoping that i can get some feedback/support from someone on here.....

i want to have babies, and i have no idea how this will affect/ if this will affect my pregnancy.

i know, i know... i'm 18, and a virgin! i've got a good 5 years before i plan on making my children. but having kids is my number one goal in life... it's the most important thing in the world to me, and i've always carried around this shadow... this doubt, that maybe i won't be able to because of my blue spot. i don't know, but i would like to be able to tell my boyfriend of 3 years for sure if i can have kids before we get married.

my mom and i mainly created this pregnancy-problem theory, because of the blue spots that are on my "private region" as previously mentioned. my family physician showed a little concern to how CARRYing a child would bear pressure and might cause pain in this area.

the dermatologist at the hospital said i would need an MRI before she could make any type of guess.

anyways, i still think and pray every day and night about this fear about my pregnancy.
i don't know what i want to hear... just any input about the affect a venous malformation has had on pregnancy. i want to eventually get an MRI done, but until then, any advice, encouragement, or insight would be so awesome!!

ps- i know this post is probably full of errors about the actuality of venous malformations-- which serves as evidence that i haven't been properly educated by my doctors about my condition through the years. so any corrections or insight is welcomed.

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  #2  
Old 11-25-2003, 07:00 PM
rand
 
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Default Re:LOOONG post, and a question about pregnancy

Good question. I am now in my forties, but in college, I came home on a break during my freshman year and told my mom I needed information. I was very worried. Since I had what was termed a "birthmark", would that affect any children of my own? Was it genetic? My mother, bless her, got hold of one of my doctors from twenty years earlier, and got him on the phone.

Remember that nothing [zero, zip, nada] was known when I was born, and not much had changed twenty years later. The doctor, too, was very old-school - he was convinced that what he knew was all there was to know.

The doctor pretty much thought I was ridiculous. "Congenital" does not mean "genetic".

Well, in the summer of 2002, I attended the VBF conference, and I learned a lot about the current thinking regarding hemangiomas. They theory is that some of the placenta breaks off during gestation and attaches to the forming placodes --areas of the head, usually. The "damage" is done before the fetus is fully formed.

I guess --I hope-- that there will soon be ways to detect such a thing in utero. I hope, too, that research will also be done to discover what is the cause of the breaking-off. It could be that some women are in fact genetically predisposed for this to happen. If so, researchers may be able to estimate the odds of that woman's offspring having the same genetic condition or predisposition.

I have not given birth. [I do, however, have a son]. I leave it to others who have had children to give you their anecdotal evidence about any effects. I hope they do. Perhaps you should post in another area in order to reach these people.

When the time comes, you are well advised to have all of the appropriate pre-natal testing done.

Rand
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  #3  
Old 02-22-2004, 11:36 AM
Gayle
 
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Default Re:LOOONG post, and a question about pregnancy

Hi, I am sorry I haven't read your post earlier. I can tell you how my VM has progressed through the years. And it might help you determine how aggressive you might want to be in your search to help your own situation. I do know that you are the one that has to determine how much you want to help yourself to get the results you want. I have found a lot of mis-informed Dr.'s through the years, the first thing you need to do is get a proper diagnosis. This website is a good starting point for finding one. I went to the best, Dr. Waner, in Little Rock, Arkansas. It took a while to get in but it was well worth it. I knew that he was the foremost expert in this field although there are plenty of good Dr.'s out there, I KNEW he would know what needed to be done. He then told me the best treatments available for my problems. Now as for how this VM has progressed , When I was born it was very small, and only could be seen as a pea size flat vein on my tongue, as I grew older it slowly grew. When I reach puberty it got a little larger although not very noticible I then started seeing blue veins in my cheek, but they could be covered with makeup so it never really bothered me. I had two children and with each birth I noticed a marked period of growth of my VM with each. I went through menopause at 42 and the death of my father which was very stressful for me which both caused more growth. I now had a large area of blue-purple mass on my tongue and on the inside of my cheek, one sinus cavity is also blocked with the VM. I started having symptoms with my heart also, which is like a fluttering or irregular heart-beat. (Common to people with VM's) I had seen many Dr.'s in Tampa, FL throughout the years to no success. They told me the technology was not there to help me. I had a hysterectomy and went on hormone replacement which made my VM's grow again this time a lot larger. (I didn't know what was causing the growth) I finally had to do something when the dentist refused to treat me, so I started looking again for Dr.'s 1 1/2 years ago and found one in Tampa that wanted to strip 3/4's of my tongue off then go on to a series of surgeries to correct the growth but he stressed that it would only come back more aggressive and that it was a very bloody surgery. I found this website just before the scheduled surgery and actually got to talk personally with Linda Rozelle-Shannon who told me just what to do, she is the most instrumental person in persuading me to take my life into my own hands and do what I have to do to get out to see Dr. Waner. She has saved me so much pain and heartache that I can't even begin to tell you. I didn't know where to turn, there was no one who had ever seen anything like this that I could find on my own. I felt different and ashamed of my condition, but not anymore. I know I am not alone, that there are many others out there going through the same thing, some much worse than me. If you indeed have a VM you probably will see growth steadily, especially with hormonal changes such as pregnancy, but with the treatments available it can be managed. The second time I had surgery in Little Rock I met a lady with a problem (her privates) like you and she was having lazer treatments on them the same day I was having surgery. She couldn't say enough good things about Dr. Waner and his nurse, Diane.
If there is anything you would like to ask me please feel free, I can only tell you my experiences, but I hope what I have been through can help.
Gayle
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  #4  
Old 02-22-2004, 07:21 PM
christielee21
 
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Default Re:LOOONG post, and a question about pregnancy


rand and gayle, thanks for the encouragement and input. God bless!
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  #5  
Old 02-22-2004, 08:05 PM
eprmo eprmo is offline
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Join Date: Dec 2003
Posts: 133
Default Re:LOOONG post, and a question about pregnancy

I am in Missouri (St. Louis) if you ever need to "talk" more..I don't know where you are, but I am available...... I am the mother of a 14 yeard old who has a H on her nose.. We have lots of talk about H's around our house.

Please feel free to contact me, if you want..

Elissa
psyelectro@aol.com
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Elissa Rifkin
VBF Developmental Specialist
psyelectro@aol.com
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  #6  
Old 04-05-2004, 02:10 AM
christielee21
 
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Default Re:LOOONG post, and a question about pregnancy


Hi Elissa. I'm in Springfield at SMSU, originally from Aurora, Missouri. What doctors do you use? I've used one in Kansas City... but never St. Louis.
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