"Suffering the Slings and Arrows of Outrageous Fortune"

A Win: Finally

Picking up the tale where I left off in yesterday’s post, we were in desperate need of someone to help. Em’s pain was out of control, the Rheumatologist was clearly not interested in helping, and we had wasted 3 months seeking help from doctors who had no interest in helping.

I was done, with the whole situation. Done waiting. Done playing nice. And, I knew that our best chance of getting some help in the near future was from the Pain Management doctor. Yes, he had rather foolishly and unhelpfully stated “if it isn’t broke, don’t fix it” at our last appointment but we have always liked him and he has had Em’s pain under control for 3 years now. So, if it wasn’t him, we were going to have a problem.

I have been researching, talking to others living with CRPS, and formulating a plan of sorts. I will be the first to admit that it may not be a perfect plan, but it is far and away better than anything anyone else has come up with to date. So, I prepared for our appointment and was ready to fight for my plan, while being open to any constructive ideas.

My plan involves two parallel tracks. The first track involves getting to a neurologist who actually knows CRPS. If he has an opinion about Small Fiber Neuropathy, so much the better. We need someone who can advise and guide us, from a position of actual, current knowledge not a position of vaguely remembering learning about CRPS 20 years ago. In a CRPS facebook group,  I heard a name of a doc at OSU whose interest is in CRPS and autonomic dysfunction. I have no idea how good he actually is but it is a name and that is the best I have right now. So, I wanted a referral.

The second track is Ketamine Infusions. This is a very big gun but we are facing a very big enemy. A big gun is absolutely necessary, in my opinion. We know how serious a treatment this is but everything I am seeing says this is our best hope of getting Em into remission. There is no guarantee that it will but I believe that it is our best shot. Because her CRPS (assuming that is what she has) is full body, some of the other treatments are just not options. Furthermore, she is already on many of the meds that would be the first choices to treat it, so our pharmaceutical options are a little limited. Narcotics are not the answer – we need to stop the pain cycle, not drug her. So, Ketamine. (And, may I say, this is the hardest thing about parenting a medically complex kid. The doctors can’t or won’t make these decisions so the parent is left to push for it. All I can do is pray that my instincts are correct.)

At our last visit, I mentioned Ketamine and he was not receptive to it. But, this time I was determined to have a serious conversation. This time, I also had a name of a doctor in Indianapolis who does Ketamine Infusions for CRPS and I was asking for a referral to him. However, I decided that it would be better all around for us to have Dr. V do this treatment at our own hospital – it would be easier on Em to travel less and it would benefit others with CRPS in the area if he can offer this treatment. It seemed wise to push for Dr. V to investigate/ learn how to do the infusions but have the referral request as a back up plan.

So, I had printed off both referral forms for both the neurologist and the other Pain Doctor – I had them filled out as much as I could and had all the paperwork requested attached. All they had to do was fill out their part and fax them. I must admit, this was a stroke of brilliance on my part. 🙂

I also had numerous articles about Ketamine and how this is the treatment of choice, how to actually do the infusions, billing codes (inpatient, not outpatient as we would be hoping for but it proved my point that this is a legit treatment), and a page of contact info of several docs who do these infusion who Dr. V could consult with.

I was ready to fight. To throw a fit. To get hysterical. Whatever it took, this was the day.

We got there and I was already a little discouraged – they were clearly swamped and running late and I worried that we would be brushed off. The NP, who we have normally been seeing for the past year or so, came into the room, her normal cheery self. She took one look at us and knew something was wrong. She sat down and listened intently. As soon as I mentioned Ketamine infusions, she said, “you are going to have to talk to the doctor. I can’t help you.” I expected this, but I had anticipated that we would have to make another appointment. Instead, she fetched him immediately and he sat down with us ready to talk about Ketamine. He expressed his concerns but was open to discussing it. I handed him articles about this treatment and he skimmed through them right in front of me, and made comments that indicated he was actually absorbing the info. He thanked me for doing so much leg work for him.

He stepped out to make a phone call, saying he was getting his billing people to look up billing codes. We discussed it further and we agreed that there were some obstacles to over come – insurance being one. He suggested oral Ketamine as a more immediate option. He stepped out again. I think he talked to someone about finding a compounding pharmacy to prepare it. I am hoping he figures out that Ketamine lozenges are a real option – I know a couple folks who are getting real relief from them.

So, at this point, he is willing to look into infusions. He knows the doc in Indianapolis who I was going to ask to be referred to and can talk to him about how to do the infusions and billing stuff and hopefully make it happen. Not tomorrow, but hopefully soon. And that was as much as I could hope for.

In the meantime, he wanted to try a couple new meds. Cymbalta and Nucynta. And he upped one of her current meds to try and get her some immediate relief. I am not thrilled with adding two more meds but I am very thankful he understood that she needed something NOW. We will just cross our fingers that she tolerates these meds and they don’t cause more problems. Serotonin syndrome is a big concern but we are watching her closely and it is a calculated risk.

He agreed to refer to the neurologist at OSU – the sooner the better because there is always a waiting list. We will fight to get her in asap but we have to get the referral first. He seemed surprised that I had a name, because he has had no one to refer patients to. This could be positive for other patients as well.

He spent an hour with us, on a day when he was not scheduled to see us and when he had patients already backed up in his waiting room. We didn’t get around to talking about what to do about her shoulder and we didn’t get around to talking about a plan on how to handle future ER visits if her pain is out of control. And, we left the whole Ketamine issue a little more open ended than I wanted. He is going to look into it – hopefully he will call with answers, but I can call the office and ask if I don’t hear from him. All things considered, I was so grateful for the time he spent with us and for him taking the issue seriously, that I would not complain at all.

I feel bad that the other patients were waiting so long, especially the gentleman who was already mad about his billing situation and entertainingly vocal about it, but, honestly, Em has been juggled and passed along and ignored for 3 months while living with the most painful condition known. It was our turn to be focused on, to be cared for, and it was, quite frankly, overdue. After the awful ER visit, after being dumped by the Rheumatologist, after months of everyone just saying, “Good Luck”, we needed a win. And this was a win.

In reality, we are no further ahead than we were before Friday – although two new meds to try is progress. We still have no answers, no diagnosis, no obvious path to treatment. But, we have a sketchy plan, a name of someone who might help, a treatment option that wasn’t an option before, and we have a doc who cares. And we have hope. Which we were pretty short on before this visit. So, while we technically aren’t further ahead, it feels like we traveled miles on this journey in one afternoon. Because one doctor went out of his way to help us.

That shouldn’t be amazing. It shouldn’t be a novelty. But it is. And we are very, very thankful.

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Comments on: "A Win: Finally" (6)

  1. 2 of my EDS kids have been on Nucynta for years. Does not help pain but helps relax them some. One kid is on Cymbalta and Nucynta and feels the combo helps a little, but not significant for pain relief. Neurostimulator implant has been the only successful pain relief.

    • Unfortunately, it looks like the Cymbalta is triggering some concerning symptoms – I talked to the pharmacist this morning and he agrees that it sounds like she is having some indicators of serotonin syndrome. So, she is stopping the Cymbalta. The Nucynta should be less of a problem, so we will let her try that. It is frustrating because it seemed to be helping her pain some but it just isn’t worth the risk!

  2. Mary Sue said:

    Em is lucky to have you! Every zebra needs a tiger to fight for them, and be their advocate!

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