Experiences with VMs over time?

[kmacgregor]

Hi - Relatively new here. I'm curious to hear about others' experiences with VMs over time, trying to get an idea of what to expect with our daughter.

A little background - she's 5 months old and has extensive VMs on left shoulder/arm/hand and left hip/groin/leg with a few smaller lesions on her left ankle and foot. She has a small leg-length discrepancy on that side (the involved left side is shorter) and definitely less muscle in her left leg and arm. Her hand swells somewhat when she's sleeping, but that's tentatively been deemed to be just a venous issue, not lymphatic. She's a happy, extremely curious, energetic baby -- a real delight.

Anyway, realizing that everyone's case and experiences are quite different, I'd still like to get a feel for some of the issues those of you who are parents faced in the early months and years, or those of you who grew up with VMs yourselves. What do you wish you'd known when you or your child was younger, what age were you or was your child was when they first seemed to have any discomfort from the VMs, that kind of thing. We're trying to be as proactive as we can with her in the hopes that maybe we can head off some problems early on, if that's possible.

Thanks! I look forward to hearing from any of you.

[chrislancaste]

Hello,

My story is kind of silly because for the first 12 years of my life I was told I had a hemangioma. When I was finally correctly diagnosed with a venous malformation, I seemed to be told conflicting information constantly on whether I could have surgery, birth control, children, etc!

My VM has slowly spread through the years from a dot on my foot, to a large malformation on my foot, add small VMS up my leg.

The pain in my childhood was very rare. I remember dropping a piggy bank on my foot once and it was swollen and painful for a week, but that would have happened regardless. Of course it hurt when the rowdy boys at school thought it was cute to kick a girl in the back of the foot. There were occasional things, but no chronic pain.

Pain started more in high school during heavy involvement in cheerleading and dance, but was always manageable.

Through college I went through a lot of emotional turmoil trying to figure out whether I could have children (thinking about getting married..). I did a number of MRI's, CT scans, and ultrasounds (Finally, the proper care I should have received as a child!) and was told that I was safe to have children but needed to be closely monitored.

After college, I got pregnant. The later part of pregnancy was difficult. My feet swelling caused a lot of pain in my VM. There were days I could barely put pressure on my foot. My doctor prescribed Tylenol w/ Codeine and I took it when needed to sleep, but mainly managed the pain by staying off my feet, and staying out of the heat to control swelling. I had a perfectly normal delivery and perfectly healthy baby!

And here I am today! Hope that helps!!

[chrislancaste]

PS- I know you don't want to think about the birth control issue yet as a parent of a precious baby girl, but if it helps, I have had good luck with the Mini-Pill... it has progesterone only...

[kmacgregor]

Thanks so much for such a helpful reply - exactly the kind of information I was hoping to hear about. Congratulations on your baby - how wonderful that you got through everything so well.

Our daughter's a little over a year old now and still very energetic. She has more swelling in her affected hand and arm, but otherwise is doing well with cruising and any leg length discrepancy seems to have resolved itself or perhaps not been present in the first place, for which we're very thankful.

And yes, I have worried briefly about puberty, birth control and pregnancy, but with years to go till then, pushed that to the back of my mind. Who knows what advances may have been made by then anyhow.

I was so glad to hear how active you've been with the cheerleading and dancing, too. We do a lot of hiking and walking and I'm hoping these won't be uncomfortable activities for her, along with all the other outdoor activities that are so exciting when you're a kid.

Again, thanks for taking the time to write such a thoughtful reply! Much appreciated.

[Upinflamezzz]

Just thought I'd chime in here. I have extensive venous malformations in my left hand and arm. When I was younger they didn't bother me too much besides the physical appearance. Although, if I didn't catch the hardball in the webbing of my glove and it landed in the palm it did hurt very bad. Since I am now 37 things have changed a little. What happens is as we grow older the outer layer of our veins weaken and the pressure of the VM causes pain. The VM's in my arm have slowly progressed above my elbow. I do have pain daily with the pressure on my elbow. It hurts. When we sleep our blood flow slows down which causes the VM's to fill with blood increasing the pressure on the outer walls of our veins. So pretty much now a days I wake up every morning in pain. Not a good feeling I know. The pain does subside as soon as I start moving. I have pain throughout the day I'd say, some time with the increased pressure on my veins, I have dizzy spells. It's weird how when they take my blood pressure on my right arm everything is normal and when they take the left it's very high. I actually encourage the right side. I hate the pressure on my left arm. I think one day that thing will cause a hemmorage.
All in all, I went to Johns Hopkins a couple of years ago and they said they could stop the pain with sclerotherapy. I never scheduled this procedure because I was worried about the outcome. Would they just come back? The trama of the surgery may make things worse. If anyone has ever had the procedure please let me know. I think when everything is said and done I will probably suffer a stroke some where in the near future. I think the VM's are migrating up my arm on towards my heart. Do I expect to live a long life? No. Anyhow, if you have anymore questions feel free to contact me. I'd just like to relay one more bit of bad news. There was a girl that I grew up with who had almost the same thing as I do, but in her right arm and hand. Hers was much worse then mine though. She passed away about 8 years ago due to complications. She was about 26.