After eight months of being in the rehab and hospitals, I was discharged to go home. Every time that my parents told people that they were taking me home, everone would be so surprised and warn my parents how scary it would be. Well, the only scary thing is seeing how little doctors want to help when they hear C1 spinal cord injury.
The first doctor I saw after coming home was a neurologist – I had my check up and we talked about things that were bothering me. At the time I had terrible pain, just like most people with SCI do. I asked if he could give me a referral for physical therapy but all he did was write me a prescription for Baclofen, and he said if that doesn’t work then I can get surgery for a Baclofen pump. I took it for a few weeks and it did nothing and then after a few months I was accepted into a physical therapy program, and just by using muscle stimulators my pain got much better. I think that’s my biggest problem with their methods – they are so quick to give you drugs even if there might be another way.
Another lovely time was when I thought my diaphragm was working a little and I tried telling my doctor but she refused to test it. Since I have a C1/c2 injury and I had gotten my pacer removed due to an infection, she thought there was no chance of it working. My parents kept asking her for three months to just do a test, and once she finally agreed, my diaphragm was actually working (surprise, surprise!). My diaphragm and lungs are still very weak however, but I have been able to go 27min without the vent and working to increase the time.
So my last and favorite story was last year when I burnt my heels and had to go to the ER. As soon as I got there all the nurses and doctors made such a big deal, and maybe it did look like a big deal. Without doing a proper examination or MRI, the doctor pulled my parents aside and told them that they would have to cut off my feet! I guess it was an easy decision for the doctor because she thought that with a C1 injury I would never walk so I wouldn’t really need my feet… my parents fought her for a few days straight and when she finally did the MRI she came back and said, sorry I was wrong, her burns are actually not as bad. So if it wasn’t for my parents, I would not have feet right now just because of a careless doctor.
Its these times, plus others, like when a doctor misplaced my feeding tube and when another accidently cut an artery in my arm, that have made me very disappointed with doctors. I don’t know if I’m unlucky, my injury is too complex or I just haven’t found the right doctors in my area…or a combination of all three, but in the past two years I have become increasingly more disappointed with the medical system. Before my accident I used to avoid going to the doctor for no particular reason – but now I see why I felt that way.