Raising funds for research, raising awareness, and sharing my story.

Help fund the research for better treatments and a cure for cavernous malformation for Alliance to Cure Cavernous Malformation. Any amount helps and is sincerely appreciated. Thank you for considering and hearing my experience.

Cavernous malformation is a rare disease where leaky blood vessels form in the brain or spinal cord and bleed, leading to debilitating symptoms in an estimated 138,000 Americans. Patients with this diagnosis may suffer symptoms like migraines, seizures, and strokes. The only treatment is brain or spine surgery, which can lead to additional deficits.

My experience:

A Friday afternoon in January 2024, while I was working at my desk in Bozeman, a strange headache crept up. I became nauseous and the left side of my face felt uncomfortable and tingly. After several hours, I went to Urgent Care and was treated with migraine medication, but it didn't go away. I tried to sleep it off but every time I opened my eyes, the room was spinning. Ten hours after the onset of the headache, I crawled to the bathroom and started throwing up, every half hour, for 7 hours straight. By 5 am, it seemed to subside, so I went back to bed. But every time I got up, I'd throw up again.

Andrey brought me to the ER Saturday night. They gave me a CT and MRI. The general ER doctor didn't see anything unusual, but they didn't have a neurologist available until Monday. My symptoms had stabilized, headache was gone - I just wanted to leave ER to go home and sleep. The doctor said since she didn't see anything, she would release me as long as I could pass a basic walking test. I failed it, and my stacked double vision had also not resolved and was concerning and confusing for her so it was clear there was something serious going on.

She called around to partnering hospitals, and sent my scans to the University of Utah. They identified an abnormal cluster of blood vessels (a cavernous malformation, or cavernoma) in my brain stem that had ruptured. Bozeman ER arranged for an air ambulance to take me to Salt Lake City where they had resources and neuro support to determine what could be done. I spent 4 nights being monitored at the University of Utah in ICU and Neuro Acute Care.

The hospital care was supportive (https://www.linkedin.com/posts/kceames_healthcarew...), provided medication to minimize inflammation and to make me comfortable, but ultimately could not do anything for it other than monitor. Surgery is not a viable option in my case as it's in a delicate place in the brain stem.

Those with a cavernoma have a 1% - 3% chance of a bleed. After a first bleed, there is a three fold chance it bleeds again in the next 1-5 years. I will take a daily beta-blocker for the next 5 years to keep my already low blood pressure even lower to minimize risk of another bleed, and get regular MRI's to monitor the growth of the cavernoma. I'm lucky and grateful that my symptoms were reversible this time. Unfortunately, many others, some with multiple cavernomas, suffer seizures and more permanently debilitating issues.

My symptoms:

The bleed was in an area impacting a cranial nerve or nerves responsible for some basic motor functions and sensations. My symptoms, many of which lasted 4 weeks after the initial rupture: spins, double vision, difficulty and discomfort with basic vision (dealing with light, screens, far away and fast moving objects), numbness / hot cold / prickly sensation on the left side of my face and mouth and left fingers, tingly lips, difficulty breathing, change in voice, intense and long lasting hiccups (2-3 hours a day for several days), loss of appetite, weight loss, weakness in my left arm and leg, instability, imbalance.

In retrospect, the resolution of the physical symptoms was the easy part. The psychological trauma was not, and brought an entirely new set of emotions for me knowing I will always have this little blackberry in my brain, and it could bleed again at any time. This experience challenged and dampened my natural positivity and adventurous spirit. I had intense and overwhelming fear and anxiety that made me question my entire future. I was afraid I could never be more than an hour away from a major hospital at all times. I didn't think I could ever fly on a plane, travel internationally, or do overnight backpacking trips into the wilderness ever again. My life felt like a dead end from this vantage point.

What helped:

Getting back to using my body and eyes in the physical world, taking long walks, riding a stationary bike, light workouts, writing, a handful of EMDR therapy sessions, time passing, finding things like the Alliance to Cure so I didn't feel so alone, spending time with my family, cuddling with my therapy cat Lewis (on loan from by brother and sis-in-law), talking with friends, and receiving supportive messages from colleagues and acquaintances - human connection has been more important to me than ever before.

Where I'm at now:

I'm doing very well. My last MRI shows the blood has fully resorbed and my brain has healed from the rupture. The event feels far away from me now. Fleeting thoughts about it occasionally arise, but I feel emotionally disconnected from it, perhaps from the combination of EMDR and maybe an emotional self-defense mechanism. I am back to flying and all of my every day activities and sports. I love life and continue to live it as I had before this happened. I am planning and hoping to take an international flight this Fall.