Arteriovenous Malformation is a disorder that affects the connections between veins and arteries disallowing the delivery of nutrients to tissue.
I am a 17 year old female who is active in sports and in relativly good shape. I have had episodes for the past couple of years where my vision will go away and ill have a loud ringing/buzzing in my ears and nausea followed by a headach. I have also have a history of migranes. I went to a pediatric neurologist in january right after the most recent episode and he thought i had complex migranes but wanted to be sure so i got an mra, mri, and an eeg. the eeg was clean but the mri came back with arteriovenous malformations in my left parietal lobe. i ended up have gamma knife radiation because of the location of my mri, my neurosurgeon said that i would have permanent neurological problems and most likely have a stroke once he got to the avm because it was too deep. i wanted to have surgery and just get it over with but i wanted to have a normal life. so march 14th me and my family went to the illinois gamma knife center which luckily is about 20 minutes from our house. my surgery went well, although they told me i would be fine the day after, bs, i had horrible headachs for three days after, my face swelled to the point where i couldnt even open my right eye (tho they did tell me this would happen, tho it wasnt until i was leaving...), i didnt go back to school til wednesday after (my surgery was on a friday) the holes from the halo took a while to heal and i have permant nerve damage on the right front side of my head from the pin but i can deal with that. i just went back for my 3 month visit (which was actually 4 months after bc my surgeon is always so booked) and luckily theres no swelling of my brain. my avm hasnt shrunk at all but they didnt expect it to so soon. i go back next march for another mri and visit and then the march after that i have an angiogram and i have a 90% chance of my avm being gone by then.
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
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After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
Mothers' medical conditions: AVM-brain, Myasthenia Gravis,...
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