A woman from Ontario writes:
My mother, a retired homemaker, is a 78-year old survivor of Dandy-Walker syndrome a form of congenital hydrocephalus. She was born in 1937, long before the condition was identified and long before the invention of shunting as a control measure. The actual diagnosis was not made until 2007.
She was hydrocephalic at birth and didn’t meet her milestones on time, but intellectually she was otherwise OK. After months of intolerable head pain and even leakage of cerebrospinal fluid through her ears and eyes, she fell into a coma at the age of 6. She underwent risky cranial surgery to alleviate the pressure. She survived the surgery, but continued in a coma for some weeks. When she finally regained consciousness, she was blind and had to relearn how to walk, feed herself, speak, and so on.
Eventually, she regained the sight in one eye, but was always plagued with weakness on her right side and balance issues as well as headaches. She married and had me at age 19 in 1957. Her husband died in 2007. She now lives in a retirement home.
For about 8 years she’s been under the care of a neurologist who prescribed Acetazolamide to control the intracranial pressure. It’s been a godsend. Surgery at her age has been ruled out as far too risky. So, the only thing that allows her to control the fluid balance in her brain, and the pain, is Acetazolamide, four 250mg tablets per day.
I was truly shocked 2 weeks ago to be suddenly told by her pharmacy that they couldn’t fill her prescription and that I was on my own to find a supply. I was stunned and terrified. What if I couldn’t find any? My mother can’t do this herself. She is mostly blind, mostly deaf, and mostly immobile. She couldn’t call around. It was up to me.
I called her GP. She was unavailable but her staff confirmed that it was up to me to find more. I asked how I was supposed to secure the drugs since I didn’t have a prescription? I was told that first I had to call or visit pharmacies and confirm a supply. Then I had to call the GP’s office and provide them with the appropriate fax number and then they would fax the prescription. Then I would go to the pharmacy, pay, and pick it up. Right.
After calling around for most of the morning, while at work, because I was informed, on a Friday, of the lack of meds with only ONE DAY left in my mother’s supply. I was panicked. You can’t just go from 4 pills to zero pills in one day.
I managed to find one pharmacy with 5 individual pills in stock. I called my mother’s neurologist to beg him to tell me if he knew of a supply or at least prescribe a substitute. I couldn’t get past his receptionist. I called my mother’s GP and threw myself on the mercy of the receptionist. She called a local hospital pharmacy for me and secured a supply enough to last 2 weeks. The she found a tiny drug store in the west end of town up the street from their office and they had enough for another 2 weeks.
Many calls and false starts later, I got the meds and now mum is good until the end of July. I am hoping that this is enough to last her until the manufacturer resupplies the drug stores. I was told that the date might be July 10 or maybe “sometime in August.” Right.
I dread having to go through all this again. Placing the onus on the patient is just wrong. What if my mother didn’t have an advocate like me? I can tell you that I was in agony while trying to sort all this out. The pressure, the responsibility, the feeling that I’d been thrown into the deep end holding an anvil, was overwhelming. There has got to be a better system in place.