Em has been having significant pain after her surgery. A little more than 2 weeks post appendectomy and she still needs pain meds, pretty much around the clock. The hospital was fairly generous with the number of pills in the prescription they sent home with her, although the script wasn’t doing more than taking the edge off her pain. After two weeks though, that script was almost gone, no refills and weaning off the meds was clearly not happening yet. (When her meds start wearing off or she has gone past time for her next pill, she would start getting grouchy and whiny and pretty much immobile. When I would ask if she could wait a little longer to take a pill, she would almost panic at the thought. So, yeah, she isn’t ready to go off them yet.) Furthermore, she is already on Aleve every day, per Dr. Tinkle’s instructions, so that eliminates Ibuprofen as a pain relief option. And large doses of Tylenol are pretty questionable, not to mention not very effective for her. So, her pain relief options were automatically limited.
I called the surgeon’s office yesterday to ask what our options were – the nurse seemed to understand our problem, but the surgeon was out of the office until Monday and the nurse wasn’t sure if she would be able to get a hold of her in time to help us. She advised me to call the pain management doctor and see if they would be able to help us, so I got an appointment to see him today. The nurse called me back to let me know that the surgeon wanted us to follow up with the pain doctor anyway, so it worked out.
So, we headed out to this doctor, who we just saw for the first time in April and who I really, really liked. But, I have liked other doctors the first time we saw them and subsequent visits were disastrous, so I really wasn’t sure how it would go today. I was prepared to argue for decent pain control if I had to, I printed off the pain management guide from EDNF for reference and took our hospital discharge instructions and prescription bottle.
But, I didn’t have to argue. He checked her incision, said it is looking good but has some scar tissue that will be painful. Then he asked about her pain and understood when I said EDSers tend to have more pain and take longer to heal and that the surgeon wanted us to follow up with him for continuing pain control. He not only was willing to write another script to replace her previous one, but he wanted to know if what she had was strong enough or if she needed stronger.
After hearing that her pain without meds is a 8 and with meds is a 6, he wrote a prescription for a stronger pain med than she has right now. And said if we have a problem to just call and we can figure something out.
Em took her new meds this afternoon and is actually feeling good this evening, for the first time in who knows how long. She actually played her guitar for a while tonight. And she roughhoused with the dogs, hung out with the family, was upright all afternoon and was generally in a good mood, with more energy than she has had for a long time.
My one concern is that if the feeling good is ‘hyper’ feeling good or just ‘feeling good’ feeling good. She said she feels crazy hyper, but is that for real or is it just that she is actually pain free for the first time in years? Don’t have an answer yet, but will be keeping an eye on her over the next couple days. I will be giving her one of her original pain meds, the medium dose one, tonight before bed, since it has never made her hyper. Her sleep has been pretty poor for the last few nights and she needs no help staying awake until the wee hours.
Other than that, I am so relieved that she has someone who understands the need for pain control and is going to help us battle the chronic pain that has become a constant companion. The right doctor can make all the difference – I am confident in saying that our previous pain management doc would have never considered giving her pain meds and probably would have told Em to exercise or meditate to deal with the pain. I am feeling pretty blessed tonight and am no longer worrying about whether Em would be left to deal with unmanaged pain. That is a pretty good feeling and I am so glad we made the hard and scary decision to switch doctors.