Lower lip hemangioma or poss VM 7.5 yr old daughter - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo
1994 - 2015
Celebrating 21 years with
80,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > Help and Resources for Hemangiomas

Reply
 
Thread Tools Display Modes
  #1  
Old 08-01-2015, 05:46 AM
kelly007 kelly007 is offline
Junior Member
 
Join Date: Jun 2011
Posts: 17
Default Lower lip hemangioma or poss VM 7.5 yr old daughter

Hi everyone

I haven't been on here for years.

My now 7.5 yo daughter had a full lower lip hemangioma show up at 2 weeks. It grew not hugely but enough to ulcerate and leave a divit on her lip. It stayed within her lip line and just looked like she had red lippy on. It was stable for years. Not a major concern at all. But just this year I have noticed it's gone bright red again and looks a lot bigger!! I thought it would never go away but I wasn't expecting it to get bigger . I'm gutted. Have the docs got it wrong? Is it a VM instead?? I feel like I'm losing the plot over this.

We were going to have surgery this year to fix it "once and for all" but now i don't know what to do. An ultrasound was inconclusive. The docs are fobbing me off saying to just operate anyone. Will this thing keep growing now?? What the hell to do?

anyone have this happen? We have never been on any meds nor had surgery before.
Reply With Quote
  #2  
Old 08-01-2015, 05:54 AM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,794
Default

Well, welcome back. Good to see you again ... wish the circumstances were better.

You need to ask one of our docs: http://birthmark.org/experts.php You need a solid diagnosis, I would think.

Let us know who you talk to and what finally happens.

She must be on her way to second grade by now... how time flies, huh?

Missy
Reply With Quote
  #3  
Old 08-01-2015, 06:05 AM
kelly007 kelly007 is offline
Junior Member
 
Join Date: Jun 2011
Posts: 17
Default

Yes. Gutted to be having to worry about this all over again. The only thing that kept me sane all those years ago was the fact one day it would be sorted with an op. I will send an email to one of the docs. My thinking is it is a VM. No one bothered to check otherwise all those years ago. Funny how it settled for so long. I'd pretty much forgotten about it.
Thanks. Will let you know what they say.
Reply With Quote
  #4  
Old 08-01-2015, 07:34 PM
smurph smurph is offline
Senior Member
 
Join Date: Jan 2007
Posts: 459
Default

Hi there...so sorry you are having to worry about this again. I'm wondering...you said it was stable for years....did it ever involute at all? Did it fade at all over these past 6 years or just stay the same? If it's starting to change again, I think you should definitely check in with Dr. Levitin on Ask the Experts and obviously try to get to the bottom of this diagnosis once and for all. My daughter is 10 now and I feel like so much has changed in the "world of hemangiomas" during these past years, in terms of treatments and information. Good luck! Let us know!
Shannon
__________________
VBF Hemangioma Forum Moderator
Reply With Quote
  #5  
Old 08-01-2015, 09:39 PM
kelly007 kelly007 is offline
Junior Member
 
Join Date: Jun 2011
Posts: 17
Default

Hi Shannon
I remember talking to you years ago about this. Thanks for message. I feel so depressed about this. Never thought I would have to go through all this again.

It never involuted or shrunk but the docs all said lip tissue was different to skin and it probably wouldn't improve much so I wasn't too worried. It turned sort of a purplish dark colour which I thought meant it was improving but now I wonder if it wasn't just pumping more blood around. There is definite growth now.

I feel trapped in New Zealand as no one can seem to help. They all loved the wait and see approach from day one and are still spouting it now. I had my doubts it was a H early on but when it seemed to settle I thought they must know better. Never any tests done. She did have a bit of segmented hemangioma in front of each ear, down her neck along her jaw and even down her airway. We only found the airway ones after I demanded they check after reading info on here and she developed a cough that didn't sound right. Those ones never grew. All the segmented ones have pretty much gone in places.

It must be a combination of a VM and a H I think

Thanks for answering. I'm pleased your little girls is all happily resolved now. 😀
Reply With Quote
  #6  
Old 08-01-2015, 09:42 PM
kelly007 kelly007 is offline
Junior Member
 
Join Date: Jun 2011
Posts: 17
Default

Dr Linda Rozzell is looking into it for me. Thanks
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