We are raising funds to support surgery for our mother, Gretchen Santucci, who has a debilitating condition impacting her brain and nerves. Funds will go to the costs of the surgery, travel, lodging, and meals. Her health insurance will not cover any of the costs. You can read her story below. A big thank you to everyone who reads, shares, and contributes!

“Chiari” (kē-AR-ē). That’s what they call it when a part of your brain protrudes below the base of your skull, as mine does. For the lucky, it isn’t a big deal, or its symptoms are mild. For others like myself, debilitating pain takes over, and the brain can’t be counted on to do what you want it to, be it walking, talking, or even breathing.

I grew up in a German household where I learned not to complain. Strength was prized. It served me in good stead as self-reliance often does. Then last winter hit with an onslaught of headaches that were worse if I lay down. I started having intermittent trouble speaking, as my tongue wouldn’t move the way it needed to in order to form the words I wished to speak. About the same time, I’d feel wetness on my fingers that wasn’t there. I’d lose my balance, too, and I had to be more deliberate when I walked. (I had a history of falls that I’d blamed on just moving too fast, but even slowing down, I was running into walls and furniture, my body not in coordination with itself.) I decided I’d better talk to the neurologist who was treating me for benign essential tremor. He thought my headaches sounded like increased pressure in the brain and ordered an MRI. That’s how the Chiari was found, along with some other spinal abnormalities, one of which was poking my brainstem.

Meanwhile, I began dropping things like bowls and plates full of food. It was like my hand decided without notice that it was done holding onto it and let go. Reaching for things and picking them up should be simple, but it just isn’t. I end up knocking items down or off the tables, spilling water bottles and smaller containers, too, scattering contents everywhere.

The danger of my falling and breaking a hip worried my doctor (and me!) as my balance issues grew worse. Mortality increases 30% in the year after a hip fracture. Many days I just can’t think straight and it is hard to converse or concentrate. I have constant ringing in my ears. My attacks of severe neck pain are a classic Chiari sign, and scoliosis is common and can cause me incapacitating back pain from simple activities. Sleep is irregular and I rarely get enough as pain forces me to get up. Because of the unpredictability of all this I had to give up doing street outreach to victims of sex trafficking, a ministry that is dear to my heart.

At diagnosis, I was ready to do anything to get relief. I scheduled neurosurgery, which in the US, typically involves removing the lower back part of the skull, plus part of the first vertebra, then cutting into the covering of the brain called the dura and sewing in a patch to expand it. Then I found out that the purpose of this surgery is *not to cure* Chiari, but to halt the progression of symptoms in the best case, or at least slow the progression of symptoms. However, it may achieve neither goal; it may make things worse. This deeply troubled me. I canceled surgery.

Early on, I’d read they were doing surgery in Spain that was highly successful and less invasive. “It’s impossible for me to go there,” I thought, and read no further. Then I heard a podcast snippet in which a priest spoke about ways in which we limit God, for example, by ruling out a possibility ourselves and never asking God. It resonated with self-reliant me. After much research (which took me a long time), attending a virtual Chiari conference with worldwide experts, and talking with Chiari patients who’d been to Spain, as well as ones who opted not to, I sent my scans and x-rays to the Chiari Institute (in Spain) and scheduled a consult with them. In it the doctor showed my husband and me important things on my films not previously mentioned and explained how my nerves and brain were being impacted, and explained the operation they do. It is minimally invasive and therefore safer, approaching the problem from the base of the spine instead of the base of the skull. This is the surgery I want to have and for which I humbly ask your financial support. I have joy knowing there is a treatment to address all my symptoms, and great hope that if lot of people help, it will become a reality for me. I cannot thank you enough for considering our family’s request and helping me get a changed life!