A little over two years ago, I returned from a vacation and started getting dizzy. My journey has included:

7 ER visits with stroke-like symptoms

4 Neurologists (1 migraine specialist, 1 vestibular disorder specialist)

1 Neurosurgeon

1 Cardiologist

1 Vascular Surgeon

1 Neuro-vision Optometrist (4 months of vision therapy)

4 ENTs

4 Physical Therapists

Countless follow-ups with my PCP

About a month ago, I finally received a diagnosis for my dizziness after my last trip to the ER where a stroke team was activated. I have Mal de Debarquement Syndrome (MdDS); a rare, non-curable condition that makes me feel like I am in constant motion. I recently underwent a two-week intensive treatment protocol (2x a day for 2 weeks) that has improved my dizziness by around 50-60%. The treatment is cash-only and I will need more of it.

With the improvement from the treatment, I became able to separate the symptoms of dizziness from the constant feelings of lightheadedness and other neurological symptoms (I lose feeling in my hands often). After some nerve conductivity tests ruled out nerve damage in my arms, I was referred to two more specialists: a vascular surgeon and an upper cervical specialist. From recent imaging in the last two weeks, we have found that I lose blood flow to my arms and hands when I raise my arms out to my sides. We also learned that my C1C2 vertebrae are "twisted" (misaligned in opposite directions). This misalignment is not only painful, but it also pinches nerves and presses against my vertebral artery, causing the lightheadedness. Thankfully, there is treatment. But, it is also "cash only". The alternative would be cervical fusion surgery that would require me to take leave from work and file for disability while I recover (2-4 months).

I have no idea what percent of the cash outlays for vision therapy, vestibular retraining, and the non-surgical decompression I need to fix my neck will be covered by insurance. And frankly, after two years of medical bills, coming up with the cash upfront is becoming problematic without paying penalties on retirement accounts. In no way am I hoping to raise a number that makes me "whole", just hoping to get some help with the upfront cash outlays to get the treatments I need. Thank you for reading my story. Your help would mean more than you will ever know to me.