Monday, October 15, 2012

Almost back in the saddle after the epidural steroid more to go.

After the scare concerning tainted vials of methylprednisolone acetate used for epidural steroid injections (ESI) from the New England Compounding Center in Framingham, MA that caused meningitis that has killed hundreds of people -- the facility where I had my ESI did not use NECC vials -- it was just a waiting game to see whether I would see any benefit from it.

I was cautious because there wasn't a promise that the herniated disc would retract back once the inflammation was down -- no doctor can do that. But the hope that was I would get out of the acute pain that I've been in for what seems like an eternity.

So after a week I was kind of down because I was feeling no positive change from the steroids aside from the first couple of days, which is odd, but the same thing happened when I had a shot in the hip -- pain returned after a couple of days. The doctor (and most web sites) said normally you'd see benefit in 3-5 days. I was still in immense pain at night and first thing in the AM.

Last Thursday afternoon was a breakthrough day. Almost like a switch was flipped, the acute pain seemed to disappear. It was replaced with a a fair amount of stiffness in my lower back, but that was tolerable. Where there was no improvement was in the numbness/neuropathy that goes down the outside of my left leg and covers my entire foot. People with neuropathy know what I'm talking about but it's a paradox -- your limb feels dead, sometimes as if it isn't there, but alternately, it can be highly over-sensitive to touch -- socks and shoes with a lot of ridges or nubs can actually hurt a lot. Walking on uneven surfaces (like gravel) can be excruciating. Thank goodness it's not my right (driving) foot. I'd be screwed royally.

I tire quickly in this condition, but my strength in my left leg seems to be improving. Something odd is still going on with the nerve that is being pressed by the disc. Fairly frequently I'll have these shooting electrical-storm type sensations that shoot down inside my leg, causing spasms. It doesn't hurt, but when this occurred prior to the ESI, it hurt a lot.

A beautiful day

But on to this past Saturday -- it was a great day with beautiful weather here in Durham. I was able to walk/limp around at the Farmer's Market downtown and then at Costco, which of course is also a good amount of walking since it's a big box store. It's nice to be able to go out and enjoy the fall weather -- even if only for short bits of walking at a time. It's so much better than being nearly housebound and in the wretched pain I was in for nearly two months.

Thankfully I've not suffered from high blood glucose from the ESI; I was warned about it but I've been monitoring and seen that they've actually been better -- probably from the reduced pain levels. Pain can shoot up blood sugars - it certainly has in my case.

It's not a cure

I have to go for another ESI on October 23; the last experience was so excruciating that I nearly passed out from it. I had nightmares for days. I look at this as a painful experiment -- if I can get to 80% of my normal self (not focusing on managing this particular chronic pain; I've got enough already), I can better research my surgery options not under duress. What I don't want is to keep pumping steroids into my system quarterly, which is what many people do to put off surgery. If I've got a bad disc, I want to fix it. I'm not particularly scared of surgery; I've had a number of them already, though not on my spine. I should note that the doctor performing the ESI is an anesthesiologist, not a surgeon (I've also seen a surgeon), so the former is working from the pain management perspective, not necessarily an advocate for surgery. He hopes the ESI can address my issues, but is realistic that I may still require surgery.

Some videos. First, an explanation the ESI procedure and its benefits and risks. The doctor here talks about patients "find the procedure easy to go through, with only minor pressure, pain and discomfort."

Uh. That's BULLSH*T. That may be true for some patients. In my case they had to inject the steroid in 4 passes (the needle stayed in, but they couldn't push it all in at once because the space in the disc they needed to place it was very small -- damaged disc [L4-L5]). The two doctors were not surprised that I was screaming during the procedure. As I said in my post on the procedure:
Let's just say the injection as horrifically painful -- like something in a bad horror movie with a torture rack. My 10 on the pain scale was the initial acute herniation that sent me to the ER, rating about as bad as a kidney stone attack. This procedure was a 9-10, but not a sustained high mark of excruciation...good thing they have grips for you to hold on to while you are screaming and cursing on the operating table.
This is next video makes me queasy since I couldn't see what was going on during my procedure (you're on your tummy), but based on the pain all I could imagine was some giant needle going in, but of course it was not.

My comments on the video - the first lidocaine injection (local pain killer) didn't hurt much at all. The wiggling as the needle guided into the spine is uncomfortable, but tolerable. Once the target area is located and hit, it's a horrific stab going in. In this video the entire dose of steroid is injected at once. As I said, the location of my herniation was so tight to fill they did it in four passes with about 30 seconds to a minute in between so I could slow my breathing (I was hyperventilating and screaming), and "rest" before they pushed again.

When they said they were "halfway through" I thought I was going to die. But I tried to think about being somewhere else and said go ahead. About this time they added more lidocaine, presumably to help during recovery. The last push of the needle was when I thought I would pass out the pain was so great. I wish my experience was that of the patient in this vid.

I was so weak getting off of the table after the procedure I practically slipped down into the wheelchair. The lidocaine kicked in about 15 minutes later, leaving me numb from the waist down. No pain.

But fast forward to today - it's Monday and I'm back at work, albeit I have to keep shifting chairs because none are ideal for sitting at length for me in this state. Driving in didn't hurt. I did have a hard time getting up and ready for work because of my rheumatoid arthritis, which is currently untreated because I'm off of it until I'm sure I won't have surgery any time soon. The effectiveness of the second ESI will let me know if I can go back on Enbrel.

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