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Search: Posts Made By: dancermom
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 10-09-2013, 07:12 PM
Replies: 4
Views: 5
Posted By dancermom
ATXMom, if you have checked out the Facebook...

ATXMom, if you have checked out the Facebook group "Klippel Trenaunay Weber Sydrome," I suggest you join it. Lots of parents there whose kids have KTS!
Forum: Adults Living with Birthmarks 10-09-2013, 06:48 PM
Replies: 2
Views: 3
Posted By dancermom
Cherry angiomas increase with age. I have a...

Cherry angiomas increase with age. I have a million of them, and have not been diagnosed with any avms or vms. The sites you mention are typical for cherry angiomas and not for HHT-related...
Forum: Adults Living with Birthmarks 10-09-2013, 06:43 PM
Replies: 1
Views: 2
Posted By dancermom
Lucille, this sounds like Klippel-Trenaunay...

Lucille, this sounds like Klippel-Trenaunay Syndrome. There is an expert on this website for KTS -- look at the Medical Experts, and you can send the KTS expert a message. Also, join the Facebook...
Forum: Adults Living with Birthmarks 10-09-2013, 06:37 PM
Replies: 1
Views: 2
Posted By dancermom
Jerilee, have you written to Dr. Robert Rosen on...

Jerilee, have you written to Dr. Robert Rosen on this website to ask for his opinion? He may be able to advise you on treatment. Also, please join avmsurvivors.org and join the Canada group and the...
Forum: Living with a birthmark - my story 10-09-2013, 06:31 PM
Replies: 3
Views: 4
Posted By dancermom
This does not sound like a hemangioma. Have you...

This does not sound like a hemangioma. Have you had a CT, MRI, or arteriogram, or do they just keep lasering? It is possible you have an arteriovenous malformation (avm), whose growth can be...
Forum: AVM Help and Resources 08-29-2013, 07:36 PM
Replies: 9
Views: 10
Posted By dancermom
Also, I would recommend the Facebook group...

Also, I would recommend the Facebook group "Klippel-Trenaunay-Weber Syndrome" to anyone with KTS or PWS.
Forum: AVM Help and Resources 08-29-2013, 07:35 PM
Replies: 1
Views: 2
Posted By dancermom
ellejayvee, you may wish to join...

ellejayvee, you may wish to join avmsurvivors.org. We have an Extremity AVMs group, where you can connect with others who have avms similar to yours. And yes, pain is an issue for many.
Forum: AVM Help and Resources 08-29-2013, 07:32 PM
Replies: 5
Views: 6
Posted By dancermom
Ginorocco1, please join AVMSurvivors and join our...

Ginorocco1, please join AVMSurvivors and join our facial avms group. There are 200 or so facial avmers on the site with a handful of CM/AVM members. We can help you through this.
Forum: AVM Help and Resources 05-27-2013, 03:56 PM
Replies: 14
Views: 2,854
Posted By dancermom
Do you belong to AVMSurvivors

Sberry, there are a good number of members at AVMSurvivors who have avms or vms of the hand. Wayne Yakes in CO and Robert Rosen in NY was the most often recommended doctors for hand avms. If you...
Forum: AVM Help and Resources 05-27-2013, 03:52 PM
Replies: 1
Views: 2
Posted By dancermom
AVMSurvivors

I suggest you join AVMSurvivors.org

There are about 5,000 members with brain avms there.
Forum: AVM Help and Resources 05-06-2013, 07:38 PM
Replies: 21
Views: 4,717
Posted By dancermom
New group for Wyburn Mason

Hello, we recently formed a new group at http://www.avmsurvivors.org/
for Sturge Weber, Wyburn Mason, Parkes Weber, and Klippel Trenaunay. Please join us.
Forum: AVM Help and Resources 05-06-2013, 07:29 PM
Replies: 9
Views: 10
Posted By dancermom
New group for Parkes Weber and Klippel Trenaunay

Hello, we have formed a new sub-group at http://avmsurvivors.org/ for Parkes Weber, Klippel Trenaunay, Sturge Weber, and Wyburn Mason. Please join us, and you will find information and support. Best...
Forum: AVM Help and Resources 05-06-2013, 07:27 PM
Replies: 7
Views: 2,238
Posted By dancermom
New group for Parkes Weber and Klippel Trenaunay

Hello, we have formed a new sub-group at http://avmsurvivors.org/ for Parkes Weber, Klippel Trenaunay, Sturge Weber, and Wyburn Mason. Please join us, and you will find information and support. ...
Forum: AVM Help and Resources 04-20-2013, 07:43 PM
Replies: 6
Views: 7
Posted By dancermom
That's great! I would appreciate it if you would...

That's great! I would appreciate it if you would share your experiences at avmsurvivors.org on the Extremities AVMs group, as the information will benefit many others with similar avms and vms.
Forum: AVM Help and Resources 03-24-2013, 01:12 AM
Replies: 12
Views: 2,253
Posted By dancermom
Tonilynn, I recommend you see Dr. James Suen at...

Tonilynn, I recommend you see Dr. James Suen at UAMS, who specializes in head and neck AVMs. UAMS is hosting the fourth international symposium for vascular anomalies of the head and neck this...
Forum: AVM Help and Resources 03-24-2013, 01:07 AM
Replies: 7
Views: 2,238
Posted By dancermom
If you don't get a response from these ladies,...

If you don't get a response from these ladies, jenmatt, there are many Yakes patients at avmsurvivors.org whom you can contact.
Forum: AVM Help and Resources 03-24-2013, 01:05 AM
Replies: 13
Views: 4,281
Posted By dancermom
Cipi, I am sorry to hear about your vm. Facial...

Cipi, I am sorry to hear about your vm. Facial differences are psychologically very difficult, especially for young women. Please join avmsurvivors.org, where you can get help and support.

Cipi,...
Forum: AVM Help and Resources 03-24-2013, 12:58 AM
Replies: 6
Views: 7
Posted By dancermom
That's great, Ashley!

That's great, Ashley!
Forum: AVM Help and Resources 03-24-2013, 12:57 AM
Replies: 1
Views: 2
Posted By dancermom
Hi, Louise, I can't answer the question about the...

Hi, Louise, I can't answer the question about the clot, but I suggest you join AVMsurvivors.org to get information and support for your daughter's vm. There is another mom there whose infant son has...
Forum: AVM Help and Resources 02-06-2013, 10:04 PM
Replies: 18
Views: 4,518
Posted By dancermom
metoo, I am sorry to hear about your husband. ...

metoo, I am sorry to hear about your husband. Having so many avms means that your husband may have an underlying condition. There are several possibilities: HHT, Cowden Syndrome, neurofibromatosis,...
Forum: AVM Help and Resources 02-06-2013, 03:36 PM
Replies: 7
Views: 3,341
Posted By dancermom
That's great, Lena

I'm very glad to hear about your good results with Dr. Yakes, Lena. My son's AVM is close to yours; it's on the forehead. I hope you will consider telling your story on avmsurvivors.org -- we have...
Forum: AVM Help and Resources 02-06-2013, 11:52 AM
Replies: 5
Views: 6
Posted By dancermom
There is now a group on Facebook for parents...

There is now a group on Facebook for parents whose kids are taking sirolimus for complex vascular anomalies. If your child is currently taking Sirolimus, or you are considering the drug, you may...
Forum: AVM Help and Resources 02-06-2013, 11:49 AM
Replies: 1
Views: 2
Posted By dancermom
Arm embolizations

Hi, Danielle, there are a number of patients of Dr. Rosen's on avmsurvivors.org

If you join the Extremity AVMs group there, you can read past discussions about embolizations.
Forum: AVM Help and Resources 02-06-2013, 11:07 AM
Replies: 8
Views: 1,695
Posted By dancermom
Hi, Rita, I would strongly suggest you get...

Hi, Rita, I would strongly suggest you get recommendations from the members of avmsurvivors.org before beginning treatment at Hopkins. I am from Maryland, and my son was a patient at Hopkins...
Forum: AVM Help and Resources 02-06-2013, 11:01 AM
Replies: 1
Views: 2
Posted By dancermom
UK group on AVM survivors

Hi, there is a UK group on http://www.avmsurvivors.org/ that you may wish to join. There are other members who have arm avms on that group; perhaps you can get some doctor recommendations. There...
Showing results 1 to 25 of 44

 
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