To recap: a lot going on… concussion and post concussion symptoms, possible CSF leak, recurrent ear infections. Lots of doctors. Blah. Blah. Blah. Here are Part 1 and Part 2 if you want the longer versions.
As I have mentioned the brain/ neurological stuff has us concerned but there are always other issues to make things even more interesting. In November, Em screwed up her shoulder. It had been an ongoing issue, one injury after the other and one day it just quit. Got an MRI and it showed tendinopathy, which is a fancy way of saying tendinitis. Basically she has no movement in that shoulder that does not cause pain and has been in a sling day and night since. External rotation is excruciating. There was no evident/major tear on the MRI but we got her in to the Ortho to find out how to proceed.
If you have read for a while, you might recall that Em is rather needle averse. She will do pretty much whatever she needs to do to avoid any and all sharp objects. But, she wasn’t surprised and didn’t object when they offered her a cortisone shot. Well, she did tell the PA who did the shot that he was rude as he inserted the needle. She had been told it wouldn’t really hurt, just a little pressure, and she found that to be not precisely true. He laughed and told her that he was almost done and she could say whatever she needed to say to get through. Which was not a wise offer in my opinion, considering I never know what might come out of her mouth at any given time – and she was suffering from a concussion so he got off lucky, I think! Later she asked how far the needle went in and I told her she really didn’t want to know. She said it felt like he shoved it into her joint and I told her that is sort of the point of the shot. She was not impressed!
Anyway, he didn’t hold out much hope that the shot would do much on its own but he sent her to PT and was hopeful that the shot would help PT be a little less painful and more effective. In all honesty, I don’t think the shot did anything – she has had no noticeable pain relief, but then again who knows what it would be like if she didn’t have the shot. It was definitely worth a try and I was so proud of her for braving it. She pushes through an awful lot on a daily basis but this was kind of a big deal.
On to therapy… She had her eval on the 31st. She is seeing “her” therapist, who has pretty much been with her from the beginning. So, while he is admittedly not an EDS expert, he knows Emily. And we trust him. Her eval revealed nothing we didn’t already know. Her shoulders are extremely unstable. They slip in and out with pretty much every movement. That makes rehabbing her shoulder challenging. She will not tolerate normal rehab; for now, she has very simple isometric exercises that are done with me stabilizing her shoulder.
- arm stabilized and in ‘neutral’ position by her side so she can do a few reps of pushing up, down, in and out. These are isometric exercises so we are talking tiny movements. Doing 5 leaves her winded. Doing 10 exhausts her as if she had just lifted her own body weight. We have pushed up to doing 10 but it is more important for her to do 5 good ones than 10 sloppy ones.
- With her arm/ shoulder stabilized, she does a few reps of external rotation. This is very painful. The goal is tiny movements to stay below that pain threshold as much as possible.
- with arm/ shoulder stabilized, she squeezes her shoulder blades together. Sounds much easier than it is.
- We added to the first exercise at her last appointment – we are going to bring her arm out of neutral, to maybe 20 degrees and try the isometric movements. That one is going to be rough.
- When her arm is out of the sling, which he does want her to do as much as possible when feasible, he wants her to stretch her arm out straight, gently move her wrist and fingers, and bend it a few times. That last part is incredibly taxing. She shakes as if she was lifting 100 pounds. Clearly, her muscles are weak.
Unfortunately, her other shoulder is nearly as bad. There is no injury but it is weak and it is suffering from compensating for her left shoulder. We are doing exercises on both sides and hoping for the best.
Everybody we have seen while she has been in the sling has made a big deal of her getting out of it because her shoulder will freeze up. We kept telling the doctors that the problem is her arm falls out of the joint if it is not supported. It is unstable enough that freezing up starts to sound good at this point. (I exaggerate there a bit, freezing up is all too possible and we don’t want that either, but you probably get what I mean.) We felt pretty vindicated when the PT was so concerned about her instability and told her to keep it in the sling. She should, and does, take it out but it has to be supported when not in the sling. So, she either holds it in place with her other hand or props it up with pillows.
The Ortho PA did say if PT doesn’t help, the doctor might need to go in and tighten things up. I didn’t go into it then, knowing we will cross that bridge when we come to it, but surgery is not a good option. Seriously. I mean, it could absolutely become necessary and we may be facing that choice down the road but we are going to do everything humanly possible to avoid it, because once we go down that road, I fear we will never stop. And that doesn’t even bring the issue of CRPS into the mix and how bad an idea surgery would be in that regard. I am only talking about the reality that tightening an EDS joint invariably will fail in a year or two or five and she would be considered lucky to get that much time out of a repair. And yet, we could find ourselves in a position where possibly gaining a year or two of function might start looking mighty good.
Suffice it to say, her shoulders are not good. We feel we are in good hands, both with the Ortho and the PT. We follow up with the Ortho (last time she just saw his PA) on the 18th and hopefully she will be making some real progress in therapy by then. I think it is safe to assume this will be a long, hard, grueling process. There is no easy fix and she is willing to do what she needs to do to get better.
We are concerned about her neck. Of course, wearing a sling is hard on her neck. Her muscles are already tight and it is just getting worse. As I mentioned in Part 2, the Concussion Expert wants her to do stretches to loosen up her neck and hopefully ease her headache. She can’t really do any of the stretches he suggested, so I have been massaging her trigger points hoping to ease the tightness. Unfortunately, that has led to her neck being rather scarily unstable. When those trigger points are released, she ends up a bobble head. And that is not good. It is a matter of constantly juggling one issue with another and trying to figure out how to manage them both; often, they are competing problems with solutions that cause direct complications for another issue. It feels like we just go round and round.
But, we have a plan and know where we need to be headed. Everything else is just part of the journey. We have been down a similar road before and made it through; there is every reason to believe this time will be no different!