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 Thursday
Started by Kyle. Last reply by LionLady on Thursday.
Started by Prashant. Last reply by Autumn Nicole on Tuesday.
Started by Carlysmom. Last reply by Tessy123 Jul 9.
Well, the saga continues. Off to Boston again Friday for 2 more appointments. Echocardiogram and pre-op assessment to see if my 15 cm pelvic AVM can be treated via angio as surgery is not an option due to its complexity. Fortunately symptoms are still minimal just a bit more frequent. Biggest concerns are bleeds and cardiac stress so treatment is suggested while I'm young and healthy. I guess this is where 55 y.o. can be considered young. Wish me luck!!
Jackie, there is a specific group for Facial (Head/Neck) AVMs where you might be able to get answers to any questions you might have. Here is the link: http://www.avmsurvivors.org/group/facial-or-head-neck-avms
All the best, Debbie
Teresa, I hope they can find out definitely what's going on and get you on a path of less pain.
Take care, Debbie
I have an MRI Thursday on my right calf. I look forward to finding out for sure if it is a AVM in my calf or something else causing me pain but also fear it. I am hoping the doctor isn't right and that it isn't a AVM but am not quite sure if anything else would be any better. They can see what they think is a AVM on the ultrasound and I won't know the results of the MRI till Friday morning when I go see the doctor so I am sure I won't get much sleep that night, not that I am sleeping very well right now with my mind racing. I know that something has been going on in my right side of my body for about 4 years now. I have gone from running almost everyday to injury after injury to my right leg stopping me totally from being able to run. I feel like it is all linked to what ever is in my right calf. Thanks for letting me rant. Teresa
Those are all side effects I had with alcohol embolization. I experienced swelling, extreme fatigue and severe depression after every procedure. That's why I stopped doing embolization. I believe there may be other embolization agents that may not have these side effects. You may find other people who have tried other agents on the facebook AVM Awareness group. Good luck
I have been living with a very large AVM on my thigh for 57 years. I have been very fortunate and have not been very effect by it until recently. About 20 years ago I had an embolization with coils and it shut off the shunt which did not reappear. I just had an alcohol and glue embolization last Weds. I have very little pain but I do have swelling and I am tired, Not sure if it is due to the steroids that I am on ( will be finished with that on Weds) or the procedure itself. The next procedure is scheduled in 4 weeks. The doctor is very hopeful and positive. It has been great to work with her. I found her information on this website. Any comments on the recovery from an alcohol procedure is welcomed.
Sign Upor Sign In
Or sign in with:
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.
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
Oculopharyngeal Muscular Dystrophy
Primary Sclerosing Cholangitis (PSC)
Psoriatic Arthritis (PsA)
Traumatic Brain Injury (TBI)
Trigeminal Neuralgia (TN) Ulcerative Colitis
Von Willebrand's Disease (VWD)
Other Rare Diseases
Posted by Donna on August 28, 2015 at 1:30pm
Avm 25 years ago on left side of brain. Now walking with a limp on right leg, could this be scar tissue? Had angiogram this week, no new developments thankfully! 5 mris on head, back, neck, spine found nothing. Emg test done on nerves.. nothing.…
Added by Madere (dancermom)
© 2015 Created by BensFriends.org
Report an Issue |
Terms of Service
Please check your browser settings or contact your system administrator.