Hey y’all. Just wanted to share a bit of what I’ve been going through and request prayers, energy, however you speak to God and the universe to guide me towards the right neurosurgeon and hold my hand on this journey after being diagnosed with Syringomyelia, 2 Brain Tumors, and a collapsed lumbar spine. 

I went to the ER and was told everything was fine after having what I can only compare to a seizure — but I was awake and aware the entire time. I’m 28, and this was the second episode like this I’ve had in the last 8 months. The last doctor ruled out it being a seizure since I stayed conscious and sent me home.

The first ER doctor this time took blood and did labs. Everything came back “normal,” and they wanted to send me home — even though I was in so much pain that not even Dilaudid was helping, and I could not walk on my own.

I pushed back.

A shift change happened and a new doctor came in. He asked me to repeat the entire experience, reviewed my medical history, and ordered more tests. Again, everything came back “within normal range,” but he didn’t have access to an MRI machine at that location. In his words: “I know this may sound extreme, or unappealing, but I really do not want to discharge and send you home. You would be a fall risk, and you live an hour away from town… something isn’t right.”

Even though I didn’t have a clear diagnosis, he said, “I would like to have you sent to another hospital via ambulance and admitted for observation.” I agreed, because I was (and still am) terrified of what’s happening to my body — and I knew something wasn’t right, despite what all the labs said.

Fast forward — after a 5-day hospital stay, they discovered a rare condition: a mass had formed inside my spinal canal. The condition affects 0.008% per 100,000 people. It is extremely rare and extremely detrimental — capable of leading to paralysis or even paraplegia.

Needless to say, I’m so grateful for the intuition of the doctor who fought to get me admitted and was honest about his concern. I’m thankful I didn’t let the first ER doctor send me home again.

Now, I’m on a long and scary journey to find a neurosurgeon who has experience with this specific surgery. But I’d rather face the reality of what I’m up against than sit back and let time take my body from me.

No doctor at the hospital I was transferred to had ever seen this condition before. Very few had even heard of it. One neurosurgeon even held back tears telling me he wasn’t capable of performing the surgery — and I thank God for his humility and for not using me as a lab rat.

All this to say: you know your body. Doctors are human. They don’t know everything. Pursue answers, even when you're told “everything looks fine,” “labs are normal,” or “your symptoms don’t add up.”

I spent 9 months working with my primary care physician trying to find the root of these unexplainable symptoms. It took the right day, the right moment, the right doctor, and — honestly — some divine intervention to finally get the answer I needed to move forward.

Update 11/20/25:

Updates that I haven’t been ready to share for a bit. Shock and grief are heavy right now along with fear that I fight every day to ignore and avoid Google as much as possible They found a second brain tumor on recent scans. Additionally, my neurosurgeon decided to X-ray my lumbar spine (where I have had my last 3 discectomy surgeries) and discovered that it has collapsed into bone on bone in 3 different areas. This will require fusion surgery in the near future due to the bone deterioration where it is touching and grinding. For now, we don’t know much about the tumors. Awaiting a neurology appointment where we will further investigate the tumors and their relation to my neurological symptoms in my arms, migraines worsening, and eyesight changes. There is some speculation of a potential seizure disorder at play as well in relation to the loss of motor control and upper extremity pain. As for the collapsed lumbar, we are going to take a conservative approach to try and prolong fusion even if it is just a few months to year as it comes with its own negative side effects. If you feel inclined to share this, please do. My disability and time away from work has been extended and at this point may become more permanent but in the meantime I am not able to work. Every share and donation makes a difference. Much love and appreciation to you all. ❤️‍

I’m scared. But now I know what I’m up against — and me and my tribe can fight this fight together.

I am so extremely blessed by my support system, and those close to me who have been present every step of the way and shown me support both physically and mentally. You are my heroes.

Although the diagnosis is daunting, and I am scared, I am grateful know what I am up against and for the doctors who listened to me and listened to their own intuition to pursue an answer to explain the symptoms I’ve been going through.

All donations will go towards medical bills, medical related travel to find a gifted and experienced Neurosurgeon, and bills accumulated while I am forced to take time off of work due to the severity of my symptoms.

Much love and appreciation to all,

Cali