Fighting for Stability: Support My Complex Neurological Care

March 30, 2026

I wanted to share another update as things continue to evolve.

My appointment with Dr. Klinge, the neurosurgeon in Rhode Island, to assess for possible occult tethered cord has been rescheduled from May 7th to June 25th. While the delay is difficult, this evaluation is an important piece of the puzzle, as this condition needs to be definitively ruled in or out before any treatment decisions can be made. I do have several findings that raise concern for this, including an elongated medulla (the lowest part of the brainstem, where it connects to the spinal cord), along with a pattern of symptoms that could be consistent with tethering.

In the meantime, I have multiple diagnostic tests scheduled for mid-April to better understand what is going on. These include imaging to evaluate for atlantoaxial instability (AAI), as well as studies to assess for any arterial or venous compression in my head and neck. I also have a motility study scheduled to investigate ongoing gastrointestinal issues.

The intestinal dysmotility I’ve been experiencing is likely just one manifestation of broader autonomic nervous system dysfunction, which is likely related to the combination of issues already identified: craniocervical instability (CCI), the pseudomeningocele from my prior surgeries, and ongoing strain on my brainstem. Other symptoms I have been experiencing that reflect this autonomic involvement include inappropriate sinus tachycardia, postural orthostatic tachycardia (POTS), mast cell activation syndrome (MCAS), oropharyngeal dysphagia (difficulty swallowing), severe fatigue, brain fog, shortness of breath, and persistent headaches, among others. At this point, each step is about gathering more information so that any future decisions are as informed and safe as possible.

Once I complete this additional imaging, I will be sending everything over to Dr. G and scheduling a follow-up consultation to review the results and discuss next steps. I am also currently in the queue for Dr. Bolognese for a second opinion, and am awaiting his report and recommendations.

For anyone interested in learning more about CCI and AAI, this is a helpful resource: https://www.eds.clinic/articles/cervical-instability-ci-craniocervical-instability-cci-and-atlantoaxial-instability-aai

Thank you, as always, for continuing to follow along, share, and support me through this process. It truly means more than I can express.

March 5, 2026

Yesterday I had my first consultation with one of the neurosurgeons and wanted to share an update from that appointment:

After reviewing my imaging and medical history, he confidently stated that I have craniocervical instability (CCI) and suspects that I also have atlantoaxial instability (AAI). He also believes that the pseudomeningocele that resulted from my prior Chiari decompressions may be contributing to some of the symptoms I have been experiencing. He expressed that my case is incredibly complex and is recommending additional extensive diagnostic imaging and testing to better understand the full picture before making any final decisions.

During our conversation, he explained that surgery would ultimately be the only treatment option, but he is not yet sure whether it will be feasible due to the complexity of my condition and my prior surgeries. The surgery would likely involve repairing the pseudomeningocele and a C0–C2 fusion. He was also very transparent that the surgery carries significant risks. These include the potential for serious complications such as infection, rebound intracranial hypertension that could require placement of a shunt, accelerated degeneration in the spinal segments below the fusion, permanent neurological impairment or disability, and death.

Right now, the next step is completing the recommended imaging/testing so we can better understand the full picture and determine what options are truly available. I am deeply grateful for everyone who has supported, shared, and donated to my campaign so far. Your support is helping make these consultations and diagnostic steps possible.