Back pain (not cancer) and the need to self-advocate
I thought I’d start by saying that this post doesn’t talk directly about cancer – in that my back pain isn’t caused by cancer as far as I know – it is caused by arthritis and spinal stenosis.
My back pain had gotten so bad that I finally made the decision to try the epidural injection. When the shot was first described to me, I was scared away from it. I opted to use anti-inflammatories and pain killers as a way to manage my back pain. It mostly worked for a few months, but then things started get worse. It got the point where I was ending almost every day in pain. Cooking, something that I love doing, was one of the worst offenders – because it involved a lot of standing. My family doc had mentioned that the shot had helped a lot of her other patients, so with that, and the continued pain, I decided to give it a try.
The process turned out to be a little more involved than I thought it would be. I had envisioned going to the doctor’s office, bending forward (or laying down on the examining table) and having a couple of shots placed in my back. I’ve had cortisone shots before (e.g. in my toe before my toe surgery), and so had thought this too would be that simple. Nope. This shot was done in the day surgery center. It wasn’t a surgery, but was still rather involved.
The first point of pain was that I could not eat or drink anything before the procedure – as is common with most surgeries. Not a huge deal. I’ve actually gotten pretty used to it (ugg… hate that surgery has become normalized for me).
The next point of pain involved getting an IV. This turned out to be much more of a production than I expected. I’m not allowed to get IVs in either arm. The lymphedema specialist was very clear on this one. Anytime I have an IV in my arm, there is a 1% chance of irreversible lymphedema. Within hours, my arm could swell to the point of it becoming a medical emergency. It would be much worse than the minor lymphedema that I experienced last year (which took wearing compression garments for 6 months to relieve). And so, this time I was firm with the staff that I could not take an IV in either arm.
None of the nurses were comfortable with the idea of placing an IV in my foot, so the anesthesiologist was called in to do it. Unfortunately, he wasn’t able to find a vein. My veins were hiding away – as I had been dehydrated from the “no drinking” part of the preparation. After confirmation that the IV was required (the doc wouldn’t give the shot without an IV and some sedative), they called in another anesthesiologist who was could place an IV in my neck if needed. After a fair bit of a wait (they said it could be 2 hours, but it turned out to only be another 45 minutes), the new anesthesiologist came in. I had realized after the first failure to find a vein in my feet, that I had been laying down while he was trying. Laying down makes the veins hide. I had suggested to the nurses that maybe he could try again while I was sitting up, but they opted to call in the second anesthesiologist instead. She listened to me. She had me sit up, and dangle my feet off the side of the bed. After a few minutes, and a failed first attempt, she was able to get the IV in the second attempt.
I couldn’t help think about the difference in approaches – and how each made me feel. I hated the paternalistic bullying that I felt from the first anesthesiologist. His comment to me about how “it is OK to take an IV in my arm” despite what I had told him felt rather condescending. It was like after knowing me for 2 seconds, with little to no history of my condition, he had a better sense of what was good for me than I did. That my opinion on the matter wasn’t relevant to him. That being said, consent was needed, and I would not consent to an IV in my arm, so he had to do it my way.
With the IV in place, I was wheeled in, given a little versed via IV, given the shot, and wheeled out. The entire procedure was maybe 20 minutes. The IV issue meant that I spend 3 hours in the surgery center instead of 45 minutes. Ugg.
The good news is that so far the shot seems to have relieved a lot of my back pain. It isn’t totally gone, but it is no nearly as unbearable as it had been. I’m hoping that with the relief, I can now concentrate on some strengthening and stretching exercises that will reduce the likelihood of the pain coming back. I am hoping that the nerve block (which is what they did) lasts.
I’m not at all happy about all the drama associated with getting the IV. This is something that I’m going to be struggling with for the rest of my life. I need to find a better way to ensure that people know and understand what it means when I say I cannot take an IV in either arm (even from a scheduling perspective, so that they have the right staff available when they schedule the appointment).
I’m also left reflecting on what others who are not so willing to self-advocate do? Would you allow the anesthesiologist to place an IV in your arm knowing that it could cause permanent damage? How do you stay strong and self-advocate when you are also in pain? Why does navigating the healthcare system need to be so hard?