Hi everyone! My name is Ian. I was diagnosed with Chiari 1 and a syrinx in January. My symptoms started with numbness in my hands. I also have rheumatoid arthritis and my rheumatologist wrote off the numbness as carpal tunnel for several years. After wearing wrist splints at night and multiple steroid injections with no relief he agreed to send me to orthopedics. I had a nerve conduction study which showed that my nerves actually function faster than the average person, which led to an MRI of the cervical spine and that's when I got my diagnosis. I'm scheduled for surgery June 23rd, but after my surgical clearance physical, everything that can go wrong has gone wrong.
My neurosurgeon ordered a brain MRI which showed that I also have an arachnoid cyst, and intracranial hypertension that has caused my pituitary gland to flatten and my ocular nerves to thicken. On top of that, my PT and INR were normal, but my PTT was slightly elevated so I was told to see a hematologist immediately so we can figure out the issue and fix it so I can still have surgery, and they found blood in my urine so I possibly have a UTI...So yeah, I'm pretty frustrated and discouraged at this point.
I'm 31 years old, and I have 3 kids ranging from 4 years old to 6 weeks. My neck pain and headaches are getting so bad that some days I can't function but I don't have a choice. My wife stays at home with the kids and my income supports the house. I'm just really nervous that this surgery isn't going to happen, but I really need it to.