We are AVM survivors, here for your support.
For those of us with AVM's outside the brain. Facial, Spinal, Lungs, Arms, Legs...wherever!
Location: medical/symptom type groups
Latest Activity: on Monday
Started by Alan Schechter. Last reply by Alan Schechter on Monday.
Started by Tori T.. Last reply by jlizotte Dec 10.
Started by Greg McGuire. Last reply by Michelle Dec 9.
Is it normal to have an ulcer on the outside of the skin where the AVM is problematic? I have an AVM in my wrist, and it's caused so much trouble throughout my whole arm. A few surgeries ago, a clot developed in the thumb and I had to spend some time in the ICU. Since then, every time they do a procedure they tell me that there's a risk of losing my thumb. Sometimes my thumb will swell up really bad, but the swelling always goes down. Yesterday, however. I thought I had a blister, but nope. It's an ulcer. I've had one before, shortly after an alcohol embolization. Meanwhile, my thumb is almost completely numb and another ulcer is forming right in the same area.
Has anyone come across something similar like a bed-wetting alarm that can alert if an extremity AVM ulcer bleeds at night in sleep? Basically looking for some kind of a sensor or alarm that can alert/beep if the bleeding happens in sleep?
Welcome Clarinetgal! I also had embolization procedures with onyx for my AVM which is located in/near my knee. I hope your procedure and your follow up go well! I am glad you found this site- it has been a lifesaver for my family and I :)Feel free to message me if you need anything!
Welcome, Clarinetgal. Feel free to ask questions in comments here, or in a discussion above. Memmbers here may not be regulars on the site, so if you have trouble getting responses, there is also an option to message the members of this group -- you'll see it above the member pictures. Where are you being treated?
Westwin, sorry I didn't greet you sooner. If you have a question and don't get responses for some reason, there is an option to message the whole group above the member photos where it says "Send Message to group." How are you?
Hello All, Just joined the network and this discussion. Reassuring to me that there are others with similar issues and this seems like a nice location to learn and to educate through our experiences.
Sign Upor Sign In
Or sign in with:
Other Ways To Help...
This community is part of the Ben's Friends network of patient communities. Learn more at bensfriends.org.
Acute Disseminated Encephalomyelitis (ADEM)
Arteriovenous Malformation (AVM)
Atrial Septal Defect
Caregiver Support Community
Charcot Marie Tooth (CMT)
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Guillain-Barre Syndrome (GBS)
Mast Cell Disorder
Primary Sclerosing Cholangitis (PSC)
Psoriatic Arthritis (PsA)
Traumatic Brain Injury (TBI)
Trigeminal Neuralgia (TN) Ulcerative Colitis
Von Willebrand's Disease (VWD)
Other Rare Diseases
First take a deep breath, then call the National Suicide Prevention Hotline immediately. 1-800-273-TALK for members in the United States.
For international members, please visit http://www.suicide.org/international-suicide-hotlines.html for information on where to call.
Posted by Bakingstud on November 19, 2014 at 9:05am
© 2014 Created by BensFriends.org
Report an Issue |
Terms of Service
Please check your browser settings or contact your system administrator.