Just like the Knights of the Round Table, para/quadriplegics need to always be on guard. For what, you ask? Their health and well-being! The following tale is a true story that illustrates why.
In the fall of 2009, I received my first intrathecal baclofen pump. I had been experiencing increasing spasms that were more severe in nature. Doctors determined that an implanted pump was in order, after increasing my intake of oral baclofen to the point where they were no longer comfortable with that strategy. The pump proved to be the perfect solution, even if it did take a while to get used to not having the kind of spasms that felt more like range of motion exercises. By 2014 however, the spasms were back.
As it turned out, some of the tubing had come apart inside my back, so that baclofen was no longer reaching my spinal cord. Another surgery implanting a new pump was scheduled, after which things were back to normal. This new pump had a 6-7 year life, and was due for replacement in February, 2021. In March 2020, the neurologist managing my pump discussed my options for its replacement. She encouraged me to schedule the procedure with the doctor that their practice frequently utilized, but I wanted to have it done at the same place, and with the same doctor that I utilized in 2014. That is where the story gets interesting.
After calling the neurology clinic to schedule my surgery, I was told I would need a referral. No problem, I thought. Au contraire. The office managing my pump told me they would send a referral, and I set a reminder for myself to follow up if I didn’t hear anything in two months. Good thing. I found out two months later that the referral had not been sent, and neither sender or receiver notified me accordingly. Within a couple of days, I made sure that the referral was sent and received, and again set a follow-up date for myself regarding next steps. Good thing. When I followed up after not hearing anything from the surgery doctor, I found out that the referral was canceled. The person with whom I spoke could not tell me why. I insisted on speaking with the scheduling nurse, and that’s when I found out that the doctor who had performed my previous surgery had retired. In addition, she told me that pumps were not available. At first it was attributed to issues relating to covid, but I was later told the issues were related to the manufacturer. Apparently, they had a new pump that was on the cusp of receiving approval from the FDA, and they were not making existing pumps available until the new pump was approved. At that point, planning for my surgery could continue, now that pumps were available again. I was given a date for a telemedicine visit, which was necessary prior to the surgery. Once again, I set a follow-up date regarding next steps. Good thing.
Two months before my scheduled telemedicine visit, I once again called the office for the surgery doctor to verify my telemedicine visit. I now had three months of usable life left in my pump. I was told there was no record of a telemedicine appointment for me, and that my procedure had again been canceled. I guess my exasperation with this process started to show, but I was assured that the referral nurses working for the surgery doctor could straighten all this out. “They are with another patient right now, but they will call you back in about 10 minutes,” I was told. That was on a Monday morning. Despite calling on Tuesday, Wednesday, Thursday, and Friday, I was unable to speak directly to one of the referral nurses. My insistence paid off however, as the scheduling nurse finally called me back. “I see the problem,” she said. “Your procedure was canceled because your doctor has retired.” I reminded her of the conversation we had months before about this, and again reminded her of the criticality of time involved given that my pump was on the clock. She set another telemedicine appointment, and at my insistence, sent me a confirming follow-up message.
I will not relent in my follow-up until I have the scars to that I’ve indeed received another pump! The story just goes to show however that you must take the reins, and proactively be your own advocate, even when dealing with the best of organizations. The motto for the organization scheduled to replace my pump is… The future of medicine, today. I certainly hope not.
Noticeably absent when we all left rehab was the instruction manual for dealing with the myriad of situations we would find ourselves in.Ask This Old Quad articles serve to fill in that vacuum, because we have all developed tricks of the trade that we believe would be valuable for others.Share your ideas and experience with us firstname.lastname@example.org