For almost the last four years, my life has been a revolving medical nightmare. I very suddenly became unable to work, drive, or care for myself from a mystery illness. Symptoms started with dizziness and tinnitus, then progressed into bizarre visual symptoms such as my vision constantly moving in time with my pulse and bouncing up and down with my footsteps. Shortly after, my cognition began rapidly declining into a dementia-like state.

First, I was told it was vestibular migraine. Then, when no treatment helped, we moved on to looking for inner ear conditions and I was diagnosed with bilateral Superior Semicircular Canal Dehiscence (SCDS for short). The treatment for this is brain surgery, and there are only a few surgeons in the country who specialize in this. My mom and I traveled cross-country to see two of them, paying out of pocket because my insurance wouldn't cover anything out of state. The two doctors disagreed with each other—with one saying to proceed with surgery and the other saying he wasn't sure if SCDS was the correct diagnosis. We then attempted to see a third specialist only to be told he wouldn't see me after we had already flown all the way to Louisiana.

In August of 2025, I was diagnosed with a spinal CSF leak via MRI, which was then confirmed by a CT myelography. There is no way to know the exact cause, but doctors suspect it occurred due to a connective tissue disorder. It's possible that this could be the root of the majority of my symptoms. So far, I've had two blood patches in an attempt to fix this to no avail. The next step is spinal surgery.

In all honesty, to say my life for the last 4 years has been a living hell would be an understatement. I live in a constant state of confusion and dissociation and am constantly unable to see correctly or do basic tasks for myself. These symptoms have engulfed me and my life to the point where I feel as though I don't exist. The symptoms are 24/7 with no escape or relief. I have traveled to see countless doctors in various states and quite frankly lost track of the amount of money spent on this. I've been denied disability by social security. My mother and I have moved 3 times in an attempt to get medical treatment and insurance coverage. If not for my mom, I would likely be in a nursing home. I don't really have any other family or friends—my father has declined to help me and the few relatives I do have live far away. Additionally, my insurance situation has very abruptly changed in a catastrophic way, and I fear I won't be able to get coverage for the surgery I so badly need and have spent so much time, pain, and money working towards. I will possibly need to move once again and then fly back to Colorado for treatment that is now only 2 hours away. Alternatively I may have to pay for surgery out of pocket.

I'm asking for donations to help fund the surgery to attempt to finally seal the CSF leak as well as for travel expenses associated with that.

Thank you so much for reading. I will keep you all updated as things progress.