Fighting for Stability: Support My Complex Neurological Care

July 7, 2026

Medical Update 💙

I wanted to share an update following my consultation with Dr. Petra Klinge in Rhode Island.

After reviewing my history, imaging, neurological exam, and symptoms, Dr. Klinge has confidently diagnosed me with Occult Tethered Cord Syndrome (OTC). While surgery is ultimately my decision, she fully supports either moving forward with surgery now or continuing to monitor my symptoms for the time being. Occult Tethered Cord is a progressive condition, meaning it is expected to worsen over time, so this is not an easy decision.

Dr. Klinge also supports my plan to obtain a second opinion from Dr. Paolo Bolognese in New York, who specializes in all of the complex conditions I’m facing. I expect to receive his written second-opinion report within the next week. Before it can be released, however, I must pay a $1,000 fee. I do know that I want to wait to hear back from Dr. Bolognese before making any decisions about surgery for OTC. Once I receive his recommendations, I'll know whether my next step will be traveling to New York for more invasive diagnostic testing.

I also can't begin to convey how much relief your donations have already provided. Because of your generosity, I was able to travel to Rhode Island for this consultation and continue pursuing answers that have been years in the making. I am still working to pay off the remaining expenses from that trip, and I would be so grateful if we could rally together to raise the $1,000 needed for Dr. Bolognese's report so I can continue moving forward in this process.

Thank you all for your continued prayers, encouragement, and support. I will continue to keep everyone updated as I learn more.

June 9, 2026

I wanted to share another update and thank everyone who has supported my fundraiser. Because of your generosity I have been able to continue pursuing specialized medical care and diagnostic testing in my search for answers.

To date, the fundraiser has raised $2,010. Of those funds, $2,031.79 has already been used for medical expenses, including:

• Preliminary consultation with a neurosurgeon in Spain: $450.88

• Follow-up appointments with an EDS/POTS/MCAS specialist (2 appointments): $720.00

• Upright cervical spine MRI: $77.80

• Physical therapy (13 sessions): $783.11These expenses alone have exceeded the amount raised by $21.79.

Next week I will be traveling to Rhode Island to consult with Dr. Klinge, a neurosurgeon who specializes in Occult Tethered Cord Syndrome and its relationship to connective tissue disorders such as Ehlers-Danlos syndrome. This evaluation will help determine whether tethering of the spinal cord is contributing to my worsening neurological, autonomic, and gastrointestinal symptoms. The costs associated with this trip are significant:

• Airfare: $957.40

• Hotel: $644.16

• Transportation to and from the airport: $213.93

• Care for my dog while I am away: $150.00

• Food and other travel expenses

My confirmed travel expenses currently total $1,965.49 before meals and incidental costs.

For those who may be newer to my journey, I was diagnosed with Chiari malformation at age 16 and underwent two brain surgeries that year. While my second surgery provided significant relief for many years, my health has progressively declined over time. I now live with chronic pain, debilitating fatigue, autonomic nervous system dysfunction, severe headaches, dizziness, swallowing difficulties, gastrointestinal dysmotility, cognitive challenges, and difficulties with balance and walking. Recent imaging and evaluations have raised concerns about additional structural abnormalities that are likely causing and/or contributing to these symptoms.

Whether you have donated, shared my fundraiser, checked in on me, or simply followed along, thank you. Every contribution helps make access to specialized care possible, and I am deeply grateful for the support that has helped me get this far.

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.

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.

February 19, 2026

Step 1: Consultations

I will be consulting with 3 (of only 9) Chiari/CCI/TC/EDS surgeons/specialists in the world. This is necessary to determine exactly what is going on and what treatments and/or surgeries are needed.

Dr. G - The first surgeon I will be consulting with will be Dr. G who is located in Spain. I have a preliminary telehealth consultation scheduled on March 4th. During this appointment he will review my current symptoms and imaging to advise on what additional imaging and/or testing is needed for him to come to a diagnosis and recommended treatment plan. This preliminary consultation will cost $416.

Dr. Klinge (only treats Chiari and TC, not CCI) - I will be flying to Rhode Island for an in-person consultation with Dr. Klinge on May 7th. Dr. Klinge is in-network with my insurance, however, I will need to pay out-of-pocket for travel, lodging, and food costs.

Dr. Bolognese - Lastly, I will be consulting with Dr. Bolognese who is located in New York. His initial review of my case (without any face-to-face consultation) will cost $1,000. I will then receive a written report of his findings and recommendations. If he then accepts my case, I will need to fly to New York for an in-person consultation and more extensive testing.