Time to Play Catch Up

Has it really been a whole month since I last posted? It hardly seems that long, yet in some ways it seems like even longer. On April 16, I went to the hospital for an outpatient placement of an epidural line in my upper back. For three weeks, I would “enjoy” the blessings of a continuous epidural infusion of two medications made to scramble pain signals. I know this is a little confusing, but here is the information I’ve collected about them…

What is a continuous epidural infusion?
Just as an epidural is given to pregnant women during childbirth, it can also be used in the treatment of pain associated with chronic pain. Epidurals traditionally pump morphine for pain relief but are often combined with or exclusively a combination of analgesics (though this is “extra label usage” meaning it isn’t approved by the FDA for this use). Though it numbs pain, it isn’t supposed to affect sensory or motor nerves, meaning you can still feel and move, but don’t experience pain.

An epidural is performed by inserting a needle in the epidural space around the spine. A catheter is then fed into this space and the needle is removed, leaving the soft, flexible catheter in place. This is done with the aid of either an ultrasound or fluoroscopy to insure correct placement. Following the insertion of the catheter, a contrast (kind of like dye) is injected to be sure the medication will spread well and where the doctor wants it. The epidural line placement itself may be slightly painful when performed, as it involves inserting a long needle deep into the spine so it is usually done with sedation and local anesthetic. Even more painful is the “tunneling” done under the skin from the shoulder to ensure that the line is not accidently pulled out.

After the placement of the catheter, the line is hooked up to a pump which is attached to an I.V. bag containing the medication. A specific rate is set for the patient to receive through the catheter directly into the epidural space. If additional pain relief is needed, such as during physical therapy, a “bolus” rate is set allowing the patient to push a button to administer more medication.

How does this help CRPS patients?
Because pain signals to the pain are blocked for several weeks (as opposed to a few hours in a sympathetic nerve block), the brain is given time to “reset” the pain cycle. It also allows for a strenuous physical therapy program to take place, allowing the patient to work on range of motion, strength, and desensitization. Typically a very strenuous physical therapy schedule is worked out, often several hours every single day.

Like so many things with CRPS, little research has been done to prove whether continuous epidural infusions help or not. There is also much debate over which medications are best to use in the infusion, how long to leave it in, and even whether it works. There have been a few cases reported where an continuous epidural infusion cured CRPS (or at least put it into remission).

What about Amber’s personal experience?
I had a continuous epidural infusion at the cervical level (upper spine) for three weeks. The doctor used two different analgesics, and no opioids. Apparently, placing epidural lines in the cervical spine is much more difficult than the lumbar spine, which makes sense because the vertebrae are closer together and are thinner, making the epidural space smaller, which increases the risk of hitting the spinal cord. I completely trust my anesthesiologist who did the procedure, he is very experienced, probably one of the most experienced in the state for this type of procedure. I’m not sure I would even consider this at all unless I was very confident that the doctor doing the procedure knows what he is doing because it can be very dangerous if not done well.

Following the placement of the epidural line, I had excellent pain relief, in fact, nearly all my pain was gone, to the point I could completely ignore it most of the time. At first there was some difficulty in achieving pain relief without limiting my ability to use my arm. I did physical therapy every week day for 2 hours while the catheter was in place. Prior to the epidural, my hand strength was 20 lbs, after a week of therapy it was 50 lbs. I also noticed a significant change in range of motion, going from a very limited range of motion to full active range of motion within a few days. A week or so after the placement, the pain levels in my hand began to increase so the rate was adjusted, which caused some problems including hypotension, balance impairment, pupil dilation/constriction, and light-headedness as well as making me feel “out of it” and limiting motor control. I would wake up in the mornings and not be able to move my elbow or shoulder (but could move my wrist and fingers). The nurses worked very hard to balance offer pain relief and attempt to reduce side effects at the same time. I feel the epidural was beneficial in that it allowed me to participate in a strenuous physical therapy program, which has had lasting affects. Once removed however, the pain has returned, but I still have greater range of motion and strength than I did prior to it.

The other problem with my epidural was the pain it caused in my back and right shoulder (because it tunneled to the right to aim the catheter at the left arm. At first the pain was unbearable, but slowly grew better (with the help of more medication). The placement of the line was done with local anesthetic, but I wasn’t sedated. As the local anesthetic wore off, pain levels in the back increased within an expected range, but after a few days, sharp, stabbing pain gradually grew worse in the area surrounding catheter insertion site. The pain worsened to the point it was distracting and made it difficult to concentrate. I decided to continue to try to function with the pain, which was continuous, but varied in intensity. Over time, it began to have a deep ache as well. The pain has decreased some since the epidural was removed, but only after my doctor gave me two trigger point injections. Though the pain is bad, I don’t think it is the CRPS spreading because the pain is a little different. I’m doing physical therapy for my back/shoulder as well as my arm.

Any other questions? Just ask!

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