When Christina turned 40 she suddenly started having migraines every day. She was going to work as an accountant dealing with spreadsheets and math, while splitting headaches turned each day into relentless agony. After a month of this pain she finally went to see her doctor, who ordered an MRI. The results arrived as a voicemail, stating there was an abnormality on her brain and she should go see a neurologist.
Christina soon discovered that she had a cavernous malformation (also known as an angioma) on the fourth ventricle of her brain, adjacent to her brain stem. A cerebral cavernous malformation (CCM) is an abnormal bundle of stretched out blood vessels that may bleed into the surrounding area. Christina was instructed to monitor this legion with regular MRIs. Although it initially remained stable, in 2020 imaging showed that her CCM was filling up with blood. Since this was adjacent to Christina’s brain stem, there was serious risk of bleeding into her spinal fluid, or even the chance this CCM could rupture. After discussing with her doctors and family, Christina knew it was time for surgery.
Christina’s neurosurgeon successfully resected the entire cavernous malformation from the fourth ventricle of her brain, but shockingly did not prepare her for the post-surgery recovery period. Christina had to re-learn basic functions like walking and showering, a possibility that was never mentioned to her prior to surgery. She had no chance to prepare herself emotionally or mentally for these challenges, or to prepare her 20 year old child to see her mother struggle in this way. Given no choice but to overcome these obstacles, Christina committed herself to her physical therapy and was able to return to work 6 weeks later.
After returning to work Christina developed intense pain behind her eye, while her vision started looking bouncy. She was sent in for another MRI, and a legion was discovered on her medulla oblongata (a structure at the base of the brain stem) that had not been present prior to surgery. Her doctors were stumped by this development, so Christina sought a second opinion from the Mayo clinic. There she was diagnosed with hypertrophic olivary degeneration (HOD), an exceedingly rare and poorly understood condition.
Hypertrophic olivary degeneration affects one or both inferior olivary nuclei, a pair of olive-shaped structures in the medulla oblongata responsible for coordinating signals from the brain to the spinal cord. With HOD this olivary nucleus first expands like a balloon then begins to atrophy. This causes a wide range of symptoms that may mimic multiple sclerosis (MS), and varies widely from person to person.
Being diagnosed with this degenerative neurological disease was a huge blow to Christina. Initially she found it difficult finding the will to continue living, but eventually discovered new purpose after creating the Hypertrophic Olivary Degeneration Association (HODA), a nonprofit dedicated to raising funds for HOD research while performing patient outreach and educational advocacy. Hear a first-hand account of her incredible story and learn about this rare disease in this week’s episode of the Major Pain podcast.
Find HODA online at https://hodassoc.org/
RESEARCH OPPORTUNITIES: https://rarepatientvoice.com/MajorPainPodcast