Ali B’s Brain Trust

This episode of Ali B is called, “I had three brain surgeries in three weeks and now I have a new diagnosis that I don't quite get, and my leave from work is unpaid so I can’t pay my bills.”

No, really, though.

I was diagnosed with intracranial hypertension in March of 2015. Medical management of the problem failed and I had a ventriculoperitoneal shunt implanted in 2016. In September of 2022 the shunt valve began to fail and was replaced on November 9. And then the plot twists began!

Two weeks later, I visited my surgeon to report some new pain and swelling. They removed a suture and my incision split open, sending me right to the ER. I was admitted straight away and had emergency surgery the same night. They found two types of bacteria in the wound, a raging infection in my spinal fluid, and my shiny new shunt was colonized with bacteria. 

When I awoke in the ICU the next day, I learned that my application for paid sick leave had been denied because I did not make enough money before I got sick — I changed jobs in August and I haven’t earned enough money in Massachusetts to meet the guidelines for the state sick plan, and my very very small employer offers nothing. 

For awhile I remained in the ICU with a temporary external drain, awaiting clearance from the infectious disease team to move forward with placing a new shunt. I was given clearance for a new shunt but stopped at the last moment because the surgeon who removed the shunt had a suspicion about something he saw on one of my scans. After further investigation it was determined that I do not have IIH and I never had IIH -- my intracranial hypertension was real, but it could be explained. I actually have Chiari malformation type 1, which is where there is a mismatch between my brain and the space to contain it. This prevents the flow of blood and spinal fluid. The treatment was a major surgery during which parts of my skull and spine were removed and a graft of donor tissue was created to allow more space for my brain to party.

That's right... my brain was so big, I needed a new head to fit it. (Or... my skull was wicked thick.)

Unfortunately, as an optician, I don’t make the kind of money that allows for long leisurely leaves from work — and I definitely didn’t anticipate a second, long-term hospitalization in my preparations. I have already paid the copay for my first surgery but I still have a good amount to pay for the second and third surgeries. I’m also going to need to stay out of work until at least February. 

I’m looking to raise money to help keep a roof over my head, to feed my critters and myself, to pay my health insurance premium, and to keep my car from getting repossessed. I also need to pay down these bills. Anything left over will be donated to Mass General Hospital for use in their Child Life programs, helping hospitalized children still have normal childhoods. 

Thanks for coming to my TED talk,

Love, Ali B