VBF
Birthmarks
Treatment
Resources
Research Studies
Register
Donate
Community
Forum
Vascular Birthmarks Foundation Forum
>
Search Forums
Search Results
User Name
Remember Me?
Password
Register
FAQ
Members List
Calendar
Search
Today's Posts
Mark Forums Read
Page 1 of 4
1
2
3
>
Last
»
Showing results 1 to 25 of 95
Search took
0.04
seconds.
Search:
Posts Made By:
juliemn
Forum:
Port Wine Stain Help and Resources
01-15-2009, 05:35 PM
Replies:
3
Need help...where do i go from here?
Views:
769
Posted By
juliemn
I'm not sure how they would treat the eyelid. ...
I'm not sure how they would treat the eyelid. That is a question for the doctor. I know that when my son receives treatment, they do not treat his eyelid or the area very near his eye so as to...
Forum:
AVM Help and Resources
01-14-2009, 05:48 PM
Replies:
4
Facial AVM
Views:
1,580
Posted By
juliemn
Facial AVM's are rare. Although my son has some...
Facial AVM's are rare. Although my son has some vessels that show AVM characteristics in his face, he has not gone through anything like your son has.
When I first started gathering information, I...
Forum:
Port Wine Stain Help and Resources
10-05-2008, 03:13 PM
Replies:
7
dental concerns
Views:
1,505
Posted By
juliemn
I share your concerns, and it sounds like our...
I share your concerns, and it sounds like our children have similar birthmarks. My son has been seeing the dentist every 6 months since the age of 3. He is now 6. He does have bone overgrowth in...
Forum:
Port Wine Stain Help and Resources
10-05-2008, 02:59 PM
Replies:
2
swollen/enlarged PWS
Views:
999
Posted By
juliemn
At this point, I would find a doctor that either...
At this point, I would find a doctor that either specializes in vascular malformations or is knowledgeable in the different types of vascular malformations. I would start with the specialists listed...
Forum:
AVM Help and Resources
10-21-2006, 02:34 PM
Replies:
1
Before and After Photo AVM
Views:
2,121
Posted By
juliemn
How super that she has such a great support...
How super that she has such a great support system!
I remember jumping through the insurance company hoops to get the out of network treatment Ben needed for his AVM.
Julie
Forum:
AVM Help and Resources
09-19-2006, 04:44 AM
Replies:
3
16 yr old daughter diagnosed with hemangioma
Views:
1,974
Posted By
juliemn
Since they seemed a bit unsure, I would...
Since they seemed a bit unsure, I would definitely suggest showing the images and results to a vascular malformation specialist. Hemangioma's are not generally still present at the age of 16. They...
Forum:
Port Wine Stain Help and Resources
08-10-2006, 06:38 AM
Replies:
2
PWS, so confused
Views:
1,320
Posted By
juliemn
At this point, I would bring it up to his...
At this point, I would bring it up to his pediatrician and see if he/she has some type of answer for the behavior. If you have a way to video tape the incidents...even better. That way the doctor...
Forum:
Port Wine Stain Help and Resources
06-30-2006, 01:08 PM
Replies:
1
Looking for person to be on-air guest for Makeup to cover Port Wine Stains
Views:
1,488
Posted By
juliemn
You may want to contact the site admin. at...
You may want to contact the site admin. at birthmarks.com. Make up, including Dermablend, is discussed fairly regularly in that group.
Julie
Forum:
AVM Help and Resources
05-23-2006, 03:43 AM
Replies:
5
Red Ear Syndrome -- ear/nose bleeds?
Views:
3,412
Posted By
juliemn
I apologize for the delay in my reply, somehow I...
I apologize for the delay in my reply, somehow I am not subscribed to my posts anymore. I was not notified via email as usual.
What an amazing job you've done! I can empathize with the hours of...
Forum:
AVM Help and Resources
05-14-2006, 02:53 AM
Replies:
5
Red Ear Syndrome -- ear/nose bleeds?
Views:
3,412
Posted By
juliemn
I was curious about this syndrome, so I did a...
I was curious about this syndrome, so I did a google. You probably already know this, but I did find a support group on MSN for this syndrome. Just in case you didn't, I thought I'd post the...
Forum:
AVM Help and Resources
05-14-2006, 02:46 AM
Replies:
5
Red Ear Syndrome -- ear/nose bleeds?
Views:
3,412
Posted By
juliemn
I've never even heard of this syndrome. How...
I've never even heard of this syndrome. How frustrating for you.
Have you been working with a geneticist? Sometimes they have the best information when it comes to such rare syndromes. I'd be...
Forum:
AVM Help and Resources
05-03-2006, 03:43 AM
Replies:
7
DR. YAKES ANYONE?????
Views:
3,341
Posted By
juliemn
Is it a venous malformation or an AVM? If it's...
Is it a venous malformation or an AVM?
If it's an AVM and you've had surgery that did not remove the entire nidus, this could be the reason it keeps coming back.
There are several people who have...
Forum:
Port Wine Stain Help and Resources
04-07-2006, 11:50 AM
Replies:
3
Questions
Views:
1,154
Posted By
juliemn
Re: Questions
My son's treatment is done on most of the right side of his face. Everyone reacts a bit differently, but typical for him is a lot of swelling that starts several hours after treatment and lasts for...
Forum:
Port Wine Stain Help and Resources
04-04-2006, 05:19 PM
Replies:
8
PWS questions about scheduled treatment
Views:
1,447
Posted By
juliemn
Re: PWS questions about scheduled treatment
Many insurance companies cover this, though some take a bit more work than others. A doctor that treats PWS on a regular basis should be able to help you with your insurance request.
Julie
Forum:
Port Wine Stain Help and Resources
04-03-2006, 08:35 PM
Replies:
8
PWS questions about scheduled treatment
Views:
1,447
Posted By
juliemn
Re: PWS questions about scheduled treatment
It's a jungle out there...LOL. Weeding through information can be frustrating when it comes to this. The birthmarks.com site has a page dedicated to all the technical aspects of laser treatment if...
Forum:
Port Wine Stain Help and Resources
04-03-2006, 01:54 PM
Replies:
8
PWS questions about scheduled treatment
Views:
1,447
Posted By
juliemn
Re: PWS questions about scheduled treatment
I have to admit that I haven't kept up on any of the latest treatment options for PWS. We have been lucky enough to find a dermatologist that specializes in this, and we know he'll keep up with any...
Forum:
Port Wine Stain Help and Resources
04-01-2006, 03:46 AM
Replies:
2
pws question
Views:
1,098
Posted By
juliemn
Re: pws question
Laser treatment for a PWS is tuned to the vessels just underneath the skin. It shrinks the vessels temporarily. The length of time before the vessels begin to dilate again is individual. It depends...
Forum:
Port Wine Stain Help and Resources
03-07-2006, 12:31 AM
Replies:
4
Talking to a Child about thier PWS
Views:
1,277
Posted By
juliemn
Re: Talking to a Child about thier PWS
Ben's just gotten to the ripe old age of 4...and due to schedule issues had his first laser treatment in almost a year just recently. When he looked at himself in the mirror after treatment...he...
Forum:
Port Wine Stain Help and Resources
03-01-2006, 01:54 AM
Replies:
4
What to do?
Views:
1,358
Posted By
juliemn
Re: What to do?
At this age it's probably fairly common to just diagnose the birthmark. Limb discrepancy should be watched for though.
Some doctors do proceed with caution when limbs are involved, as KT may be an...
Forum:
AVM Help and Resources
02-19-2006, 01:54 PM
Replies:
1
Ben's next embolization
Views:
1,632
Posted By
juliemn
Ben's next embolization
Quick update
Ben's been scheduled for round 3 on June 1st in New York for the AVF in his brain.
We're all actually hoping that embolization won't be needed this time. If the angiogram shows that he...
Forum:
Port Wine Stain Help and Resources
02-13-2006, 03:32 AM
Replies:
14
Need help determining if infant son's BM is a PWS!
Views:
2,998
Posted By
juliemn
Re: Need help determining if infant son's BM is a PWS!
A doctor that has a good knowledge of vascular birthmarks can usually make a visual diagnosis. There are a couple of types that sometimes require more testing.
Julie
Forum:
AVM Help and Resources
02-08-2006, 04:46 AM
Replies:
5
Birth Control for treatment of Ovarian Cysts..and the effect on a VM
Views:
2,097
Posted By
juliemn
Re: Birth Control for treatment of Ovarian Cysts..and the effect on a VM
Sarah,
I believe Corinne has some information about hormone therapy and AVM's. She mentioned that it was published by Dr. Francine Blei. I also believe that someone in the group of doctors that...
Forum:
AVM Help and Resources
02-08-2006, 04:39 AM
Replies:
24
AVM Left Arm
Views:
6,964
Posted By
juliemn
Re: AVM Left Arm
Sarah,
I think that Dr. Burrow's is well like by her patients from what I've read. I hope you have a good experience with her.
Julie
Forum:
Port Wine Stain Help and Resources
02-08-2006, 04:33 AM
Replies:
9
insurance and MRI
Views:
1,581
Posted By
juliemn
Re: insurance and MRI
OT.....hi hank! ;)
Forum:
Port Wine Stain Help and Resources
02-08-2006, 04:33 AM
Replies:
9
insurance and MRI
Views:
1,581
Posted By
juliemn
Re: insurance and MRI
The dermatologist may have a standard procedure that they use with the insurance company. I've heard some to be very helpful...and some not. If you find yourself having to fight the insurance...
Showing results 1 to 25 of 95
Page 1 of 4
1
2
3
>
Last
»
Forum Jump
User Control Panel
Private Messages
Subscriptions
Who's Online
Search Forums
Forums Home
General Category
Announcements
Hemangioma Help
Help and Resources for Hemangiomas
Twins With Birthmarks
CMTC
Lymphatic Malformations (also known as cystic hygroma and lymphangioma)
Port Wine Stain Help
Port Wine Stain Help and Resources
AVM Help
AVM Help and Resources
Additional Resources
General Resources
Individuals Living with Birthmarks
Youth and Teen Support
Contact an Individual Privately, or join the Kid's Support Group
Living with a birthmark - my story
Adults Living with Birthmarks