"Suffering the Slings and Arrows of Outrageous Fortune"

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.

Continued in Part Two: Concussion

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Comments on: "Catching Up and Hanging on: Part 1" (9)

  1. I am so sorry to hear how your journey seems to never end (but I remain in awe of your ability to keep your wits about you and to even LAUGH). Love that. Am I correct that her fungus is secondary to chronic ear leaks, then? As weird as it sounds to most doctors, that seems to be fairly common in us. I just wanted to mention that *if* a lumbar puncture is ever required, an immediate blood patch would be smart (rather than waiting to see if it leaks — gads). Big hugs to you both

    • It will be a bad day when we can’t laugh about SOMETHING! Better to laugh than cry. Regarding the fungal infection… I think the jury is still out. The ENT didn’t really have an explanation for it and when I floated the idea that she would be prone to leaks he nodded emphatically. So, he clearly thought it was a possibility. He looked at her CT scan from the ER and basically said to see the neurologist and go from there. We are just trying to keep an eye on her and catch another leak if it occurs. My guess is he might have more to say/do when we go back. But clearly the fungal infection is not normal and she never had an ear infection prior so something is going on.

      And, I think you are right about the blood patch. I really, really don’t want an LP but if she needs one we need to minimize the potential problems. With how bad she feels right now, I can’t even imagine putting her through that ordeal. I might not have thought to ask/demand a blood patch right away but I shall! Because, let’s be honest, our life is pretty much at the mercy of Murphy’s Law so we may as well assume she would have problems. Thanks for that tip!

      (((Hugs)))

  2. Mary Beth Wilson said:

    I do not know where you are located but UC West Chester, OH Dr. Ernst and staff were incredible. Daughter just had lp last week and it went well. Fluroscopy with atraumatic needle. Please send me message if you need further info. We have avoided them for years and now are sorry that we did. High intracranial pressure discovered.

    • A belated thank you for this comment. (I have a whole bunch of comments I am just now getting to, sorry about that!)

      I did see this before she ended up having an LP and your comment about the atraumatic was very timely. I remember hearing/ reading about them a while back but you reminded me and they were able to use one during her LP. I don’t know how much good it did – it has been a pretty horrific experience and I shudder to think if a regular needle would have been worse. But, I was thankful to have any option that would make the LP more successful. So thank you!

      Beth

  3. For goodness sake! Attacked by the shower head! As if she didn’t have enough to deal with right now :-/

    Those neurological problems do sound scary. I’m glad to hear you were able to get an appointment quickly.

    xx S.

    • I popped this bit down in a reply, so you can choose not to post it if you like 🙂

      I get ear infections super frequently, but can’t take antibiotics except as an absolute last resort (because they totally screw up my digestive system). So I looked up natural ways to treat them, and started using tea tree oil. And it’s made an AMAZING difference!

      My ear would be hot, swollen, it would hurt to touch it, pain would be shooting down my jaw and up into my temple, and I would be miserable. Right before bed, I’d fill my ear with a tea tree solution (NOT straight tea tree oil!), massage the outer ear so the oil would go all the way in, and then plug a cotton ball in to keep the oil in there. The next day, there’d be a small improvement. I’d pull the cotton ball out during the day (so it air out), and keep adding tea tree oil solution every now and then with a q-tip. I’d repeat the “fill the ear canal up and plug it with a cotton ball” trick on the second night. By the second day, the pain and swelling is totally gone. I keep adding tea tree during the day over the next couple of days, just to make sure all the nasties are totally gone. And I do my best not to get water in my ears when I’m showering, during that whole time.

      Then, once there’s no more problems, I use the tea tree oil solution in my ears a few times a week, just popping it in there gently with a q-tip. The only time I’ve had an ear infection since is when I was a bit slack about that, and didn’t do it for a few months. But I repeated the ‘fill the ear canal up and plug it with a cotton ball” trick for two nights, and it went away.

      Oh – I probably should explain what the tea tree solution is. Tea tree oil on its own is too strong to put in ears (you might burn them!) So I make a mix with extra virgin olive oil. The basic ratio is 1 drop of 100% pure tea tree oil to 1mL of extra virgin olive oil. So if you had two teaspoons of olive oil (10mL), you’d put in 10 drops of tea tree oil. I like to make mine a bit stronger to give it more kick, so I usually mix up a batch of two teaspoons of olive oil (10mL) to 15 drops of tea tree oil.
      (I’m in Australia, so I use metric measurements. I don’t know what your version of mL is, but I checked the measurements of our teaspoons, and they are about the same size. So as long as you know that 1 teaspoon of olive oil = 5 – 7 drops tea tree oil, you’ll be good to go).

      I apologise if I sound like one of those crazy people who think there’s a natural cure for everything – and we should all throw out all our medications, and just eat more kale. I promise I’m not one of them! I just wanted to let you know about something that’s worked amazingly for me. The part that excites me most is that it doesn’t just get rid of my ear infections when they come, but it actually PREVENTS them from coming! (As long as I’m remembering to put the stuff in my ears!)

      xx S.

      • Thank you for this – and sorry it took me so long to moderate. (I am trying to get all of my waiting comments approved and answered this afternoon!)

        Her ear infection is gone (more or less, I think) but I will definitely keep this information and maybe we can give it a try once everything settles down around here!

    • (Won’t bother apologizing for how long it has taken me to reply!)

      Emily surely does have enough to deal with. If I could go back in time and prevent the #@$% thing from falling on her, I would! Such a big deal over what should have been a minor injury!

      • That’s one of the hardest things for healthy people to understand – that life with chronic illness is a balancing act, and it only takes one little thing to push you off the tightrope. A late night. A virus. A shower head falling on you…

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