Intracranial Lipomas are rare congenital malformations, usually pericallosal asymptomatic midline lesions.
i would like to hear more...how did your appt. go? you may need to go through a few (or more) neurologists before you find one you trust or feel comfortable with. My first one was horrible. second one was good but couldn't help with my other issues (dystonia, myoclonus). went to johns-hopkins movement disorder clinic. they were fascinated with my tectal lipoma, but they don't do anything about them unless they cause trouble. they wanted me to have a local neuro they could work with so on to my fourth neuro, whom i like also, but she doesn't really specialize in movement disorders either, so looking for number five. oh well. she doesn't really care about the lipoma either. i'm pretty sure mine is interfering with my spinal fluid flow so back to johns-hopkins i go. waiting for approval.
After finding out I have a Lipoma on the brain, I've done a ton of research trying to learn as much as possible. Everything the "Experts" say tell me that this can't be the cause of some of my symptoms such as Fatigue, headaches, depression, among others. However, I've discovered through reading that others with the same Dx have many of the same symptoms. As I have time, I'll try to find some of the resources I've read and add them to the community, but this is merely a hello message. I'll know more when I see my neurologist next week.
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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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.
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