Sometimes things in your life can change in an instant. For us, it all started 2 weeks ago and it seems like we’ve been on an emotional rollercoaster every since. Brian had been experiencing back pain for about a year. After seeing a couple of doctors and spending months in physical therapy without any results, we decided it was time to take things to the next level. So he went to a general doctor, explained the situation and asked for an MRI so that we could figure out which muscles were causing the problem.
So, fast forward to Friday, July 29th, we were shocked to find out that his problem wasn’t due to a tight muscle. Brian’s MRI showed that he had a tumor growing on the inside of his spinal cord. From there we both went through every possible emotion a person can experience. We learned that his tumor (myxopapillary ependymoma) was very rare, so rare that his primary care physician had never even heard of it. We learned that there is a 3 in 1 million chance of a person getting it and the few studies on the internet about it discussed treating about 20-some people since the 1970s. We also learned that it was not cancer (thankfully!), just “cancer-like” as the tumor can come back.
Brian was immediately set-up with his own personal health insurance advocate who got him in to see two of the top neurosurgeons in the area in the next week. After seeing the first neurosurgeon on the 2nd (exactly 1 month before we were supposed to leave for our trip), we realized that our honeymoon which we had looked forward to wasn’t going to happen. Luckily, we had trip insurance, but it was still a bummer. I had to contact every single company that we had reservations with in order to cancel our arrangements. It was a heartbreaking process for me since I had looked forward to this trip for so long.
Due to Brian’s tumor, the neurosurgeons recommended immediate surgery. In fact, we were told that surgery needed to be our number one priority. While his only symptom was pain, letting the tumor grow could lead to lots of other nerve related problems like paralysis and other things. Unfortunately, his surgery also posed the same risks. So it was a bit of a no-win situation. Letting things go could lead to issues, but having surgery had the potential to cause the same side effects. Our biggest concern was how the tumor and the surgery affected our future plans to start a family, which we also considered a high priority. So we went from thinking that we had plenty of time to start a family, to wondering if we might have already missed our chance.
In the end, we decided to go ahead with the surgery and it was this past Monday. My mom flew up here last Sunday to stay with us and Brian’s family is arriving in shifts starting this weekend. While it was a really long, nervewracking day for us in the waiting room (so thankful that my mom was here to wait with me), his surgery ended up going really well. Brian’s tumor was completely removed and the neurosurgeon expects him to make a full recovery without any nerve damage. He also went through 5.5 hours of MRI’s this week to make sure that the entire tumor was removed and there weren’t any others. All of those scans came back clear. We’re still waiting for the pathology report to figure out if he’ll have to undergo radiation, but we’re hopeful that he won’t.
As serious as everything was, Brian was discharged from the hospital yesterday, less than 72 hours after his surgery. Despite the surgeon having to remove 3 bones from his lumbar spine, he was up walking around the very next day. They even managed to put all the bones back without any metal plates or screws. At this point, he’s got a few weeks of PT, but they say that in 3-4 months he will be back to normal. He’ll have to have follow-up MRI’s in the future to make sure his tumor doesn’t return. And he’s got a pretty wicked looking 8″ scar right down his spine – but that’s just a reminder of of how fortunate we are.
We’ve been at home resting after our long, crazy week. I have learned all about PT for spinal patients and bought a fancy chair for the shower. We have even started to talk about options for rescheduling our honeymoon, with hopes to go on a similar European trip around our first anniversary in April. And we are back to our original plan regarding starting a family. So in the end, our scary ordeal seems to have turned out okay. As our neurosurgeon told us, now that it is over with, we can “get on with our lives”.
Lots of things to be thankful for right now,
Lindsay
P.S. The picture is post-op taken on Wednesday morning. Doesn’t he look good, for a guy who had just had his spinal cord cut open?
