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: Nov 16
Started by Tori T. Nov 16.
Started by Tylerbyler. Last reply by dancermom Sep 27.
Started by Kylielonners. Last reply by Kylielonners Sep 26.
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.
Hey guys! It has been a while since I have been on here. I hope everyone is doing well. I just was going to see if anyone had any advice because I know you are all very knowledgable on the topic of AVMS.
So I went to chicago last summer to finally have my AVM in my L arm taken care of and they couldn't fix this because they found a "connecting" on in my chest they needed to take care of first.
long story short I just had a brain MRI to make sure I don't have any in my brain. They called today and said "there are no active AVMS, though there is a venous malformation."
Anyone know what this could mean since its not arterial? (or they don't think it is right now)
We have a good number of members who have used bleomycin, especially those with facial avms. There is a limit as to how many treatments can be used, as there it a theoretical risk of lung problems over a certain amount, though no one has reported lung problems on this site. There is less risk of damage than with ethanol. If you type bleomycin in the search box at the upper righr corner, you can pull up those posts, jas.
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.