Tuesday, August 04, 2020

Adventures in cerebrospinal fluid leakage: part 5

Part 5 in a series about my wife's spontaneous cerebrospinal fluid leak condition. See part 1, part 2, part 3, part 4.

TL;DR  My wife's central nervous system (CNS) spontaneously sprang a leak two years ago. Nobody knows why. Too little pressure in the CNS causes a raft of persistent problems, including nasty head pain that never goes away, hearing problems, mental fog, etc. We have been on the hunt for successful treatment since then, with some successes and a lot of failures.  

We are almost two years into this interesting and expensive adventure. We have learned a lot about CSF leaks and how to treat them. Professional resources have independently confirmed that the CSF Expert Team at Cedars Sinai Hospital in Los Angeles is the world's best for this condition. As reported in earlier posts, this team and facility just happened to be preferred providers on our insurance. So the fact that we can use their services seems like something of a miracle.

My wife has been treated by this team four times over the past year. She has been helped, but she still has continual CSF leak problems. She constantly has a headache that can only partially be alleviated by taking caffeine and by lying down. She has developed hearing disparity and occasional mental fog. This is certainly survivable, but it seriously impacts life quality.

As mentioned in a note at the end of part 4, the imaging and blood patch procedures my wife had in February ended up improving her condition only temporarily. We later learned that during our stay in Los Angeles, COVID-19 was spreading rapidly through the area, although nobody realized this until a few weeks later. Fortunately, we escaped without contracting the virus.

In June we returned to Cedars Sinai for a fibrin glue patch. It's essentially the same thing as an epidural blood patch, but using fibrin glue instead of the patient's own blood. Fibrin glue is a product that is made from the stickiest part of human blood. They hadn't found noticeable leaks during two digital subtraction myelograms (aka DSM) during our February visit, so specialists surmised that any leak would be small enough for an epidural blood patch to be effective. That turned out not to be the case.

Conditions in Los Angeles were bizarrely different when we returned in June. Due to the pandemic, many are understandably reluctant to stay in hotels or Airbnbs, but we figured it was an acceptable risk. The Airbnb apartment we rented was just fine. It was within walking distance of the hospital. But the area, which had been crazily busy during our previous three visits, seemed like a ghost town in comparison.

Many businesses were boarded up, although some businesses were taking plywood off their store fronts during our visit. The Target store in the area had closed down permanently. Vehicle and pedestrian traffic was down to about 20%-25% of what it had been during previous visits. Some restaurants had reopened. Every business that was open had face mask and social distancing requirements. Other than the hospital, the one restaurant meal, and a couple of trips to the nearby CVS Pharmacy, we hardly interacted directly with anybody while in LA.

The first order of business was for my wife to have a drive-thru COVID-19 test. Cedars Sinai required the procedure to be done at their location within 24 hours of her scheduled surgical procedure. They told us that if we didn't hear anything, it meant that she had tested negative for the virus and we could show up for her procedure the following day. They actually ended up contacting us a few hours later to say that the test was negative. We had dinner at a nearby diner that was taking stringent precautions to prevent viral spread.

When we arrived at the hospital for the procedure the following day, we went through the check-in procedure with a few more precautions than usual, such as having temperature taken, answering questions, and wearing face masks at all times. Then we were taken to the same surgical center waiting room where I have spent many hours. Only this time, there were only three other people in the large room instead of 30-40 people. They had already made it clear that I could not come into pre-op or post-op, where I had been welcome during previous procedures. Once my wife went to pre-op, I was required to leave the hospital until they notified me that my wife was ready to be picked up.

It wasn't long before we said our goodbyes as my wife went to pre-op with a nurse and I walked back to our Airbnb apartment to spend the day working. I received some texts from the surgery team notifying me of how things were going. Eventually I received a text from my wife telling me that she wished I was with her in post-op, because she was terribly bored. Cedars Sinai requires patients who have had an epidural procedure to lie still for four hours in post-op. Our local hospital required only one hour.

Eventually it was time to pick my wife up. I drove into the pickup lane in the hospital's parking garage and waited a good 15 minutes before they brought her to the parking garage in a wheelchair. We were soon back in our Airbnb apartment, where my wife was required to rest and avoid bending her spine for two days. More boredom. We don't do much TV watching, so that kind of thing grows old, even with access to various streaming services.

On this particular trip, we got up very early one morning and drove straight through to LA from our home, stopping for food, gas, and potty breaks. We did the same thing on the way home. Leaving LA at 5 am during the pandemic made for the lightest traffic I have ever experienced in the area. We made record time.

Despite carefully following post operative instructions and being extra careful with her spine, within a couple of weeks my wife once again began experiencing CSF leak symptoms. The CS expert team has determined that another round of DSMs will be needed. They will apparently look at parts of the spine that have not been scanned in previous imaging, mainly because they almost never find leaks in those regions. The team hopes to discover one or more leak sources so that they have a clear idea of where to do surgery, instead of just working on what appear to be the most egregious perineural cysts.

We would like to hope that our upcoming trip to Cedars Sinai in a few weeks will be our last trip for surgical treatment at the facility. But it probably won't be. We still feel like we're on the right track. It seems that sticking with the expert team at CS is our best hope for achieving a permanent resolution to my wife's CSF leak problems. I will report outcomes in a future post.