Right now the medical issues are coming at us faster than we can field them. What was of the utmost importance two months ago is now on the back burner as bigger problems arise. I think it is safe to say we are in survival mode. I don’t quite know where to start as I sit down to post. I haven’t had time to even consider posting with all of Em’s medical issues and trying to survive the holidays and now there is a lot of catching up to do.
So, this post will be Part One: Brain Related. Part Two will be the rest of that story and Part 3 will be shoulder related and will be posted tomorrow. Otherwise, it would be an amazingly long post, even by my standards and that is a pretty high standard!
Last I posted, Em had been to the ER for a suspected CSF leak. Since then, she saw the ENT for her ongoing ear infection. She did have a fungal infection, which he treated. He was concerned about the idea of a CSF leak and seemed to immediately grasp the risk for her, which was a comfort. We see him again on the 19th to follow up. Her ear is hurting again so we may not make it that long.
She also saw the neurologist to follow up after the ER visit. We couldn’t get in for almost 2 weeks and in the meantime, the low pressure symptoms abated and we assume, if there was a leak, and I think there probably was, it healed. He wanted to do a spinal tap to rule out infection and check her pressure but we talked him out of it. Her symptoms were better and it did not seem wise to subject her to it, not with everything else going on, which will become clear in a moment. He understood and put a note in her chart to schedule her for a spinal tap if we call with further symptoms. That way we don’t have to go through the ER and hope they do something about it. LPs are not to be undertaken lightly for people with connective tissue disorders and, while I understand we may end up at a point of needing one, we want to avoid them if at all possible.
The biggest concern by the time we got to him, was not so much the low pressure issue because that seemed to level out, but very concerning symptoms after a head injury she experienced the day after going to the ER. It was a relatively simple, mild injury: the shower head fell on her head while she was showering. For anyone else, it would have been no big deal. For her, it has turned into a scary episode. It is perhaps complicated by the fact that she has hit her head several times in the last couple months. It was also complicated by the fact that she likely had a CSF leak and so her brain had less cushion to protect it.
Initially, the head injury was mixed up with all of her other stuff (bad reactions to new meds, low pressure/ CSF leak symptoms, even cognitive issues from CRPS) and in a way it didn’t matter because the treatment would just be to rest and allow her brain to heal, which she did. It seemed like such a minor injury that the ER would flag us as nuts if we took her in, particularly since she had been there just the day before. (“Hi, we are back. I know she just had a CT scan yesterday but she was attacked by the shower head so can we have an MRI?” Yeah, that would get us flagged for sure.) But as we got a day or two away from the injury, I started getting more concerned and had to wonder if she really did have a concussion. Like, maybe a serious one.
Then, 5 days after her injury, we had a conversation that made me realize it was more serious than I already thought. She told me we could have a conversation but she wouldn’t remember it. So, I probed and tested her memory. She could not remember how old she was going to be on her birthday on the 22nd. “Am I going to be 17 or 18?” She couldn’t remember when we were going to celebrate her birthday. I still am unclear if she didn’t know when her birthday was or just didn’t know when everyone was going to be present to celebrate. She couldn’t remember details about her upcoming Ortho appointment that I had told her an hour before. She couldn’t remember what day her brother was flying home for Christmas. Both were important events; notable to her. She couldn’t remember things that had happened the day before at her ENT visist. Over the next few days, as we waited to get to the neurologist, her memory remained spotty and concerning. My observation was that she could sometimes remember when prompted and reminded or that she guessed instead of knowing the answer, often wrong.
So, when we talked about it with the neurologist, he said it sounded like a concussion and he wanted us to see a concussion expert. I was able to get her an appointment at the Concussion Clinic at Cincinnati Children’s on the 5 and it is a good thing we made it a priority.