A Friend Under the Skin: My Intrathecal Baclofen Pump
The muscle relaxant helps relieve my spasticity and other MS symptoms
Spasticity, spasms, and hyperreflexivity were some of my first symptoms, which steadily got worse as my multiple sclerosis (MS) progressed. I was prescribed oral baclofen (a muscle relaxant often known by the brand name Lioresal), but I was sensitive to it and could only tolerate about 40 mg a day. At that dose, it barely touched my spasticity while leaving me slumped in my recliner, weak and half asleep, unable to think clearly.
Unfortunately, that dose wasn’t enough to prevent the occasional spasm from arching my back and extending my arms and legs straight out, sending me sliding out of the recliner like a burial at sea.
I tried to ignore it and let the spasticity go on until I became dependent on the rigidity to function. A stiff torso held me upright, and I made a habit of levering myself up on unbending legs to totter and turn like a circus performer on stilts. This was also the time of my worst bladder and bowel incontinence, which I blame on an almost constantly clenched abdomen.
Sleep was inconsistent at best. I desperately needed it since the almost constant stiffness exhausted me, but it turns out that rigid immobility isn’t conducive to a restful night. That, combined with a puff of cool air or the sheet touching me the wrong way and setting off a spasm, meant that a four-hour stretch of dreamless sleep was about as much as I could manage.
Something had to give.
After discussing it with my neurologist, I had a test dose of intrathecal baclofen administered via lumbar puncture. The test produced positive results, and several months later, I had the pump implanted under the skin of my abdomen, on the right side, just above the waist. From there, a thin catheter goes around to my lower back and inserts into the lumbar region of my spinal column, where it’s threaded up to the T10 vertebra.
It turns out I’m sensitive to the intrathecal version of baclofen, too, and an initial dosing hiccup turned my one-night stay in the hospital into four. After being rigid for so long, I went limp from about the bottom of my rib cage down and spent nearly a month in bed before I rebuilt the strength to even sit up without being completely dependent on my wife. This passive immobility sounds terrible, and I suppose it would’ve been if it weren’t for the blissful relaxation and the ability to sleep through the night, deeply enough to dream again.
Because of the catheter’s placement, my arms and hands are unaffected. There are a number of issues with a higher placement on the spine, making it the rare exception rather than the rule. Fortunately, those arm and hand muscles are much smaller than the muscles of my legs and abdomen and were less spastic to begin with.
Bladder and bowel incontinence continued, this time because of a relaxed torso rather than a rigid one. Fortunately, this has improved with strength-building therapy in a way it never did when it was clenched nearly all the time.
My intrathecal dose is a tiny fraction of the oral one. This means I get all the good effects without any of the bad. I’ll have had the pump for two years in September, and we’ve worked our way up to 73.4 mcg a day, nowhere near the level others with a pump are at. Dosing is regularly adjusted with a tablet-type device and its attached probe. The idea is to tailor it so that the spasticity is controlled well while my muscles still have enough tone to be useful.
The pump has to be refilled at regular intervals. It might look gruesome, but the pump is right under the skin, and the needle just breaks it before clicking into the port. It’s in me, but it’s not really “in me.” Feeling it “click” in can be unnerving, too. It’s such a distinct feeling to me that it’s still surprising that no one in the room can hear it.
The pump’s battery lasts for about six years, at which point the entire pump has to be replaced. The catheter remains, so getting the replacement is much less involved than the original surgery. Still, it’s a lifetime commitment to regular replacements, and no surgery is without risk.
This should not be considered lightly — especially, in my opinion, if one’s spasticity can be controlled through less invasive means. Spasticity was my biggest, most uncontrolled symptom. This was the right choice for me, but not one made without careful consideration by myself and my neurologist.
Ask anything you want in the comments, and I’ll do my best to answer.
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