How do Cerebral Cavernous Malformations (CCM) progress over time?

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?

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.

Hi, @thielejet2022 - I hope your meeting at Mayo Clinic in Florida in 10 days provides useful and concrete information about your wife's status with the CCMs.

I'm sorry to hear about the grief and anxiety created by the comment about "innumerable" at another hospital.

@needanswers1974 @sarahvincent @placyhall @kat9606 @brenda68 @thatstrangeone might have some thoughts to share about any experiences they may have had with double vision, balance issues, recurring headaches and right-side deficits you mentioned. Perhaps these members also have experiences with a mutation in the CCM2 gene you mentioned was discovered.

@thielejet2022, you mentioned your wife's quality of life has taken a major dive. You talked about some of the symptoms she is experiencing, but wondering how you are seeing these affect her day-to-day life, as well as yours, lately?

@lisalucier in terms of day-to-day life, the biggest issue is loss of independence. This manifests itself in several ways: 1) limited mobility in her right side - both leg and arm are affected. This makes getting in and out of a car very difficult and at times, downright dangerous - unless I'm there to assist. As such, she has stopped driving herself which is a tough pill for her since she is used to being independent. Plus - we live in rural Georgia so anything she wants to do outside of the house requires a drive (nearest Walmart is 20+ miles away). 2) overall balance is terrible, meaning that she's guarded about walking through the house without a cane. Outside is even harder with uneven surfaces and obstacles that pose a constant tripping hazard. I am there to help and guide her but that's another sign of her dependence and it's frustrating for her. 3) Final thought here is that because of the progression of her symptoms without a clear context for what the future holds, it's difficult for her to have a 'good' perspective on how this disease will play out in the long term. We've had some deep conversations about the future and her view that the end is clearly in sight. While that sounds dramatic, the lack of knowledge about her disease is certainly debilitating for all of us.

For me, I've adopted a positive mindset and truly feel blessed to help her in this capacity. Thankfully I've been able to work from the house and schedule around her needs while eliminating any unnecessary travel. I have invested a lot of time and effort to do the research to understand the multitude of challenges that she faces and feel that I have helped get us to where we are today.

@thielejet2022 Kudos to you for being such a great advocate for your wife. 👍
I can certainly understand her frustrations...especially with her loss of independence. That definitely is a hard pill to swallow.
Wishing both of you the very best as you continue to navigate this difficult journey. You are in my thoughts and prayers. 🙏🏼

Our meeting with Dr. Williams was wonderful! She took extra time to patiently address our concerns and questions. She did a brief exam which confirmed the obvious - that Lorie is dealing with hemiparesis (weakness on her right side) and spasticity (muscle tightness) that makes her movement difficult when added to the balance issues. We are looking at PT options to help with range of motion and loss of muscle tone, while also looking at her gait.

While there is no cure for CCM, there was a certain comfort in talking through the issues and her disease progression. Although incurable (at this point), CCM also isn't life threatening so we're hoping that we're on a path to stabilizing her quality of life.

Thanks to the Mayo team and this community for their love and support. We are to head back in six months for follow-up.

@thielejet2022 So glad that your appointment went well. I can hear from your post, and I am happy that you feel encouraged and have a positive outlook despite your wife's illness being incurable. And I love that you qualify the word "incurable" by saying "at this point." I continue to cheer you and your wife on. Best wishes!