Fighting for Stability: Support My Complex Neurological Care
Family and friends of Ashley Clifford are raising money through the nonprofit Help Hope Live to fund uninsured medical expenses associated with a Catastrophic Illness. Ashley has chosen to fundraise with Help Hope Live in part because donations are tax deductible for contributors and will only be used to cover medical and related expenses.
Here is a glimpse into her story:
Updates (4)
May 5, 2026
Update on my full evaluation with the Spain neurosurgeon, Dr. G.
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.
Guestbook
May 16, 2026
Continued prayers for you, Ashley. We are all rooting for you.
Stephen Whelan
May 10, 2026
Will be praying for health & support for you, Ashley!
Erin Ng
May 10, 2026
My heart, thoughts and prayers are with you. stay string, Ashley!
Pamela Hayes
