My husband brought me home from my parents’ house on September 4th. My two months away was at an end, and I was home again, trying to keep my routine, do my Gupta Program, and not think about mold.
On September 6th, I had two doctor’s appointments in the big city. So once again, my husband “worked from home” in waiting rooms.
First, I had an x-ray of my lumbar spine again. This was ordered by the sports medicine doctor. He referred me to Pain Management after the injections didn’t work and the EMG on my legs was normal. (Which feels to me an awful lot like, “If injections don’t work and you don’t have a pinched nerve, I have no idea what else to do with you. Next.”)
At my pain management appointment, I had to fill out a LOT of forms, including ones about whether or not I was a drug seeker. I filled in the little person diagram showing where my pain is. Do they even look at any of that?
I saw a young woman doctor, who was doing her fellowship, and who would report back to the doctor who was certified in anesthesiology/pain medicine. I told her my whole history, and I feel that she could learn to be a little more tactful and gentle. She pushed me to strengthen my core and stop wearing my lumbar support brace so that I’m not dependent on it forever. I agree with everything she said. But of course she does not fully understand what her patients are going through. It’s not like I’ve never tried to strengthen my core.
Eventually she picked up a model of some vertebrae and explained what radiofrequency ablation is. I think. This is what the sports medicine doctor thought the next step might be. I’d have to come in three times for different parts of the procedure. They burn nerves in the spine, which stops them from sending pain signals to the brain. I mean, sure, stopping the pain signals sounds really good. But it also sounds a little ridiculous. “We can’t help you with your back, but we do know how to destroy some nerves so you don’t feel the pain anymore, but everything that’s going on in there is still going on and progressing. Also, you’ll have to come back once a year because the nerves grow back.” Yikes. Is it worth it? My pain doesn’t hurt that bad, does it? It’s just that it’s always there. So maybe ablating the nerves is exactly what I need.
She left and talked to the doctor. By this time, we’d been talking so long I was afraid that I’d have barely any time with the specialist himself.
When they came back in together, the specialist introduced himself and said something like, “We’ve been talking and really trying to figure out what would work best, kinda throwing everything out there and seeing what sticks. And I really debated whether to even bring this up. I really debated it, but I want to ask if anyone’s ever suggested a baclofen pump.”
I was definitely not expecting that. I told him no, and I wondered why he went straight to the pump (which is surgically placed inside your body) when there’s oral baclofen. He said oral baclofen isn’t as effective. His thought process was that while there are drawbacks to the pump, maybe because my spasticity isn’t so profound, I’d need less medication for a bigger return. The first step to figuring out whether to get the pump placed is to have an injection into your spine to see if it works for you. Not wild about that either. So, I’m not ready to go that route, but I’d look over more information about it.
What else? Besides those two rather invasive options, there were also compounding cream (out of pocket, $100 a tube; I’m not optimistic that it would do anything), and CBDa. I’ve tried loads of different CBDs, but not this one, and of course it’s supposed to be stronger and better and etcetera. Maybe I’ll give that one a shot.
And then there’s Cymbalta (duloxetine). I’m trying gabapentin now, and I’m still on such a low dose that I don’t notice anything. I guess we’ll work our way up to the max dose before we decide it does or doesn’t work. I’m not really comfortable with starting a new medication while also increasing the dose on an existing one, because then how do we know which one is doing something? This doctor is fine with me being on both medicines together and seems to really like duloxetine; it works differently than gabapentin, which targets nerves. This doctor thinks that my pain is more muscular, which makes sense, based on the injections that haven’t worked so far. Sigh. I don’t know. His job was to give me all the options and send me back to my primary care doctor to make the decisions. I did also come away with a referral to pool therapy. Sounds nice, sure, but logistically, there aren’t many options.
After that my husband and I had enough time to go have lunch before returning to the hospital for the EMG on my arms.
I was much calmer this time because I knew what to expect (and because I’d been doing SO MUCH meditation over the last couple of months). And because I’m able to actually relax or contract muscles in my arms and hands when asked. Which is a big plus. Well, I’m able to relax the muscles when they aren’t under extreme duress. It’s possible that this one was more painful than the leg one. Needles going into my hands seem to have trouble. Like they’ve really got to dig. Ugh. Lots of attempted deep breathing. My hands still ached for an hour or two afterward.
It’s kinda rough to go through all that just to be told that everything looks good. I’m glad it looks good though. It’s what I expected. But now what? The doctor who performed the EMG suggested an MRI on my neck and other possible tests. But I don’t want to keep doing these time-consuming, expensive, small t traumatic procedures just to be told everything looks good.
I just had a followup with my primary care doctor today and we discussed these two appointments. She followed my lead on not moving forward with the neck MRI, and not starting duloxetine until we figure out the gabapentin. Now, the pain specialist really thought the duloxetine had a good chance of working better than the gabapentin. And the real reason I don’t want to take it (which my doctor knows) is that it only comes in a gelatin capsule and I don’t eat gelatin. I understand that gelatin capsules are cheaper than non-animal capsules, but that excludes several populations. Not that drug companies care about people’s religious guidelines, dietary preferences, or moral imperatives, I know. The skins and bones of others are not for me. Will I end up making the choice to consume the skins and bones of others every single day? For now, I’m stepping up the gabapentin.
Transitioning back home hasn’t been easy. I am still not working outside the house. I have not gone back to the school district, so my days are still wide open. And yet, I’m finding it difficult to fully do the Gupta Program, to do my 7-Step rounds as much as the program advises me to be doing them, to do the meditations during the day instead of falling asleep to them at night, to watch the videos and really take in the material. To make a daily practice of it all. To focus on anything. It’s a struggle.
What Happened to Your Legs? 