A lot has been going on, so I will will try to catch everyone up…
On November 19th, we saw the Rheumatologist (Dr. Henrickson) at Cincinnati Children’s. On the upside, we liked him. We liked the Rheumatology Fellow who talked to Em and took her history. Dr. H said we were educated on Em’s issues and thus in a good position to beat this. When I mentioned being in an CRPS group on facebook, he didn’t chide – he just said our knowledge was useful. That earned him points, let me tell you!
We felt that they took her pain seriously and listened to what she had to say. He added a med to try and help with her pain, Trileptal. She has to titrate up to a full dose over the next week or so, but she thinks the tiny dose she is currently on is helping. That gives us hope that the full dose will help. Which is good because she is in incredible amounts of pain every moment of every day. I have never seen her in pain like this, not even back in the days before she had any pain management. The situation is getting dire and there are no easy answers. I doubt they have a clue how much pain she is in, because she has gotten very good at putting up a front to hide her real desperation. But, they took her as seriously as they could and I appreciate that.
As far as an actual diagnosis, we still don’t have one. He essentially (my best interpretation of what he said) believes that once Complex Regional Pain Syndrome spreads from one region to the whole body, that it is no longer CRPS, that it becomes “something” else. He suggested that, depending on what some of the testing we are doing, the more likely diagnosis is Small Fiber Sensory Neuropathy. The problem is, Cincinnati Children’s can’t do the testing for that. Only a few hospitals in the country can, so this is another rare diagnosis that would be challenging to pursue.
My problem is, as far as I can see, Small Fiber Neuropathy really doesn’t fit her symptoms, not as a whole, anyway. She would be a very atypical case if that is what we are looking at. Emily said that she feels like for the first time a doctor has ignored the more likely explanation and opted for the LESS likely, MORE rare explanation. And, when it comes to treatment for SFN, it seems that it is a matter of addressing the underlying cause (diabetes, for example) and controlling it with pain meds. If, what she has is actually CRPS instead, treatment for SNF would mean the CRPS would go untreated and that would be a very bad thing. So, I am just not buying this idea of SNF – in my heart, I believe she has CRPS, which has rapidly gone full body, and needs aggressive treatment to break the pain cycle that her central nervous system has developed.
Complicating our visit and his understanding of her pain, was a new shoulder injury. The left shoulder, the original dislocation that started the CRPS spread in the first place, has been a problem off and on since. A couple days before our appointment, her shoulder just sort of gave out. Went numb and floppy. She put it in a sling because that has helped in the past but instead of getting better, it got worse over the next couple days. Usually, this type of injury gets better after a few days. Not this time. By the time we saw the Rheumatologist three days after the injury, she couldn’t move it and it was causing her severe pain.
So, he wants her to have an MRI. We have one scheduled for the 2nd. In the meantime, she is profoundly miserable and I think she may have really messed her shoulder up this time.. The pain, a combination of CRPS pain and a damaged shoulder that hurts with every slight movement, is so severe that she shakes and gets nauseated from it. She doesn’t want to, but we may end up at the ER to try to get her pain under control. With luck, they could do an MRI right there so we don’t have to wait until Dec. 2nd. The situation is getting desperate, to be honest. She should not have to be in this amount of pain.
The MRI will help us know what is going on with the shoulder, and he ordered some bloodwork to check on vitamin deficiencies that could cause neuropathic pain. Baring no useful results there, he wants her to do PT and desensitization. If that doesn’t help, pursue SNF testing.
As much as we liked this doctor, I am not loving his plan. I think she needs to be seen by someone – a neurologist who knows both CRPS and SNF. If this is CRPS it is crucial we start treating it – the longer it takes, the worse her prognosis. I am weighing our options and figuring out a path that will take us where we need to go. The treatments for CRPS will not hamper treatment for SNF if it turns out to be the true diagnosis, but, from what I can see, treatment for SNF would not adequately treat CRPS if that is what she has. It seems prudent to pursue the diagnosis/treatment we can now and wait to investigate SNF down the road.
Basically, everything is still up in the air and we have no more answers than we had to begin with. Except the exam at that appointment revealed that she has a perforated ear drum. They either missed it at Urgent Care or it happened since she was last there. We have an ENT appointment set up for the 15th, but her ears are so painful and she has developed vertigo, so we may end up back at Urgent Care in the meantime.
We are tired. And stretched thin. And scared. And frustrated that we are not being offered any real help in what we know to be a desperate fight for her future.
But, we are hanging in there and at least have an idea of where we need to go. For now, we are just taking this journey one step at a time.