Help John Recover from Brain Surgery

A cavernoma is a cluster of abnormal brain or spinal cord blood vessels that can, depending on size and location, cause bleeding, headache, seizure, and other severe neurological deficits. Cerebral cavernous malformation, CCM, or just cavernoma, is relatively rare, and its cause is unknown. Cavernoma affects approximately one in two hundred people, including children. Twenty-five percent of these have a familial version of the disease and stand a 50-50 chance of passing on the disease to offspring. Cavernoma is implicated in breathing and sleep problems that have affected me for a decade. After eight years of observation, now that it has bled, the risk of rebleeding and further neurological deficit has increased and will not decline.

A year ago, my body suddenly experienced a loss of sensation, weakness, gait instability, and unsteadiness, referred to as ataxia. Subsequent MRI demonstrates that a cavernoma, initially observed on a CT scan following a dizzy spell in 2016, had previously bled and increased in size. The lesion is in my brainstem, the region just above the spinal cord that regulates critical functions, including breathing, movement, and sleep. Surgery is the most common treatment for cavernoma. However, surgery in the brainstem is inherently risky and requires highly experienced and skilled neurosurgery.

Recommendations have included a "less invasive" but unproven laser treatment, the option to continue watching and waiting, and open surgery by two highly skilled, experienced neurosurgery teams. Following many months of uncertainty and indecision, I’ve been connected to a highly qualified and experienced vascular neurosurgery team in California that I trust to do their utmost to take care of me and safely remove the cavernoma. Recovery is mainly up to me and likely to involve medical rehab and up to 3 to 6 months for a full recovery. Surgery is scheduled for Tuesday, October 8.

I am grateful for the opportunity to be treated and healed. I have rarely, if ever, felt so vulnerable, but I take heart in knowing that the support I receive is mirrored daily in so many lives. In others.

I am deeply and sincerely grateful to my family and friends for their understanding, support, and love. I can’t thank you enough for your encouragement and generosity.

This GoFundMe campaign will help with co-payments, if any, for pre-operative testing, hospitalization, doctors' services, nursing, rehabilitation, physical and occupational therapy, monitoring, transportation, outpatient care, complications requiring ongoing treatment, and post-recovery care not covered by Medicare. Moreover, it will allow me to travel, arrange non-medical assistance, and do what is needed after surgery to restore my health.

GoFundMe requires a specific monetary goal. I am asking for your help raising thirty thousand dollars to support this specialized surgery, avoid a more devastating bleed, and put resources in place to sustain a successful recovery. I am putting my oxygen mask on so that I can help those around me who may not be able to reach so high.

Your contribution and encouragement can make a significant difference in my mission. Please offer if and what is available to you. I promise you, starting with yourself, that generosity will never disappoint.

This GoFundMe is critical to my healing and recovery.

The Alliance to Cure Cavernous Malformation is an impressive patient-led support and advocacy organization. I encourage anyone who might benefit themselves or others from learning more to consult the website. The Alliance’s YouTube page features an excellent 38-minute documentary, Eloquent. Watching it has helped me understand the impact of the disease better and appreciate how loved ones, doctors, and scientists have come together to increase knowledge, advocate for patients, and influence how medicine heals disease.

I am looking forward to waking up on October 8 and beyond. I hope we all do!

Thank you sincerely,

John