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Search: Posts Made By: dancermom
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: 8
Views: 9
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...
Forum: AVM Help and Resources 10-26-2012, 02:36 PM
Replies: 4
Views: 5
Posted By dancermom
How are you?

Hi, bdubray. I hope you check in soon and let us know how you are. It is easier to go through this when you feel supported.
Forum: AVM Help and Resources 10-07-2012, 08:44 PM
Replies: 1
Views: 2
Posted By dancermom
b sveinson, there are over 100 members with AVMs...

b sveinson, there are over 100 members with AVMs or VMs of the leg or foot at AVMSurvivors.org If you join, you can connect with others who have had their foot AVMs embolized and see if they have...
Forum: AVM Help and Resources 10-07-2012, 08:40 PM
Replies: 4
Views: 5
Posted By dancermom
I am so sorry to hear about your son's VM. I...

I am so sorry to hear about your son's VM. I recommend you join AVMSurvivors.org, where there are well over 500 members with non-brain AVMs. I also recommend you contact Robert Rosen, who is one of...
Forum: AVM Help and Resources 09-12-2012, 11:20 AM
Replies: 6
Views: 7
Posted By dancermom
Best wishes, ash2887. To get in touch with other...

Best wishes, ash2887. To get in touch with other Yakes patients, you may wish to join AVMSurvivors.org There are more than 65 members there with arm AVMs -- they can support you through this and...
Forum: AVM Help and Resources 09-07-2012, 07:00 PM
Replies: 3
Views: 4
Posted By dancermom
Nastasia, it does look like a VM to me. A...

Nastasia, it does look like a VM to me. A dermatologist is not an appropriate person for this -- do not let them attempt laser, as it will make aggravate the VM. Even if it were a hemangioma, it is...
Forum: AVM Help and Resources 08-31-2012, 11:25 AM
Replies: 5
Views: 6
Posted By dancermom
Sirolimus is Rapamycin

Sorry, sirolimus and rapamycin are the same drug. I didn't mean to cause any confusion.
Forum: AVM Help and Resources 08-31-2012, 11:24 AM
Replies: 5
Views: 6
Posted By dancermom
Hello, havefaith. I have a couple of articles I...

Hello, havefaith. I have a couple of articles I can send you about Rapamycin. Also, I know one or two people who are taking it at AVMSurvivors.org If you join AVMSurvivors, I can put you in touch...
Forum: AVM Help and Resources 07-09-2012, 08:10 PM
Replies: 2
Views: 3
Posted By dancermom
vm VS. avm

Vms do not have arterial involvement. If visible, they display blue on the skin, like a regular vein but more visible and complex. AVMs are high flow with arterial involvement. If visible, they...
Forum: AVM Help and Resources 07-08-2012, 04:37 PM
Replies: 1
Views: 2
Posted By dancermom
Article on Intramuscular Hemangioma

You may have had treatment already, but I thought this article might be useful to you: http://emedicine.medscape.com/article/1255694-overview

If you are still untreated, I would suggest speaking to...
Forum: AVM Help and Resources 07-08-2012, 04:29 PM
Replies: 2
Views: 3
Posted By dancermom
European AVM Survivors

Hi, I suggest you join AVMSurvivors.org -- there is a sub-group there for Scandinavian AVM survivors where you can get some practical support for dealing with your health care system. I am sorry...
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