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How do Cerebral Cavernous Malformations (CCM) progress over time?
Stroke & Cerebrovascular Diseases | Last Active: Nov 3 4:02pm | Replies (7)Comment receiving replies
Hi, @thielejet2022 - you are indeed in the right place with your post. If you also want to interact with others caring for loved ones affected by any disease, you might check out the Caregivers group https://connect.mayoclinic.org/group/caregivers/.
How wonderful for your wife to have you as her medical advocate. You mentioned you are meeting with her medical team to sort out what's known based on her imaging results and what's likely to be her future.
I'm wondering what you may have learned thus far from the imaging she's had and what her medical team has shared about what her future might look like?
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We have a meeting back at the Jacksonville clinic in 10 days for that ‘reading.’ But the first MRI in 2017 and subsequent meetings with the neurosurgeon identified six CCM’s. In May 2024, the term “innumerable” was used by a non-Mayo hospital. While I agree in looking at the MRI myself, the tech who wrote that violated the guidance by using that comment which really caused a lot of grief and anxiety. In looking at the new images, I understand but that’s not the way we would like to have found out. In general without exaggeration, I see 40 to 50 areas of concern. More importantly, my wife’s quality of life has taken a major dive. Hopefully we can talk through this and get some peace of mind about what her future will be like.