Baclofen Pump - Good? Bad? Not Sure?
At my last doctor's appointment, the Spinal doc suggested I try a Baclofen pump for my spastic muscles, and he's not the first doctor to suggest such a barbaric contraption that's placed in your side with a lead to your spinal column so the medicine can be directly sent to your spine.
You feel your body relax they say, I have very little knowledge of what that actually feels like due to my Cerebral palsy. I have had moments like getting out of a HOT almost scalding bath and for a while, I'm relaxed, or if I had a medical massage which lasts as long as she's working on my muscles. I've stretched for decades only to have my muscles revert back to being stiff immediately.
The issue I am having with the mere thought of having a Baclofen Pump implanted in my body is that what if there are complications?
These complications are life threatening to say the least. The side effects don't sound fun either and if there's a side effect I usually have it due to the fact I am petite, and I think medicine in general effects me differently than most.
dizziness or lightheadness
unusual weakness, especially muscle weakness
Less Common or rare
Bloody or dark urine
hallucinations(seeing or hearing things that aren't there)
mental depression or other mood changes
ringing or buzzing in the ears
skin rash or itching
Symptoms of overdose
Blurred or double vision
muscle weakness (severe)
shortness of breath or unusually slow or troubled breathing
Do you have a Baclofen Pump?
After reading the list of things that could go wrong why on earth would someone even contemplate such a procedure?
Imagine being in pain & tight 24/7 and even at sleep your body doesn't relax, therefore, you are constantly tight like if you consistently had stiff painful shoulders but over your ENTIRE body every day of your life which as we age gets worse. The pain not the initial injury, the initial injury doesn't get worse it's the after-effects of having a life-long disability which includes spastic muscles.
Do You Recommend a Baclofen Pump?
Less common or rare
Abdominal or stomach pain or discomfort
clumsiness, unsteadiness, trembling, or other problems with muscle control
difficult or painful urination or decrease in amount of urine
false sense of well-being
frequent urge to urinate or uncontrolled urination
loss of appetite
low blood pressure
muscle or joint pain
numbness or tingling in hands or feet
sexual problems in males
slurred speech or other speech problems
swelling of ankles
trouble in sleeping
unexplained muscle stiffness
Baclofen Pump for Muscle Spasticity
That is what it feels like to have my version of CP which is a spastic version. I'm way too tight and my muscles don't understand how to relax in simple terms.
You are fatigued all the time due to the added stress on joints and muscles. Energy to do one thing takes 5 times more energy than people who don't have Cerebral palsy.
It's a very complicated condition to manage as most of the medicine to treat CP causes unwanted side effects in almost everyone. Some do very well with therapy and others it doesn't matter what they do they are declining in spite of everything and those are usually spastic type like me who have never walked unassisted.
I also have to be realistic about what shape my muscles are in. Having spastic muscles forces your other muscles not to work they kind of hang around but if you take a way the spastic muscles who knows what strength is really left? I could be effectively paralyzed in a manner of speaking or I could just have slight weakness but you will never know until you place the pump in your body and try it.
How Baclofen Pump Works
It's a big deal for me to be able to get in, and out of my wheelchair as I can and do quite often even though I don't walk in any meaningful way I am completely independent.
I've been told by various people that the pump has changed their lives, and they lead full active lives they wouldn't have otherwise.
I've also heard the horror stories of those almost dying due to malfunctioning of the pump or the side effects were so severe they couldn't continue.
This sentence scares me:
“All patients receiving intrathecal baclofen therapy are potentially at risk for withdrawal.”
“Symptoms of withdrawal appeared within hours to a few days following interruption of baclofen therapy.” If you don't get to the hospital ASAP you can die from withdrawals of the baclofen therapy
One thing to remember is that it doesn't correct pain that you may have due to arthritis changes it just relaxes your muscles.
I doubt I will ever get the pump due to my fear of what could happen. I've never had luck with procedures and surgeries always make me sicker then a dog and I fear that I would worry all the time that something might go wrong and I wouldn't be able to make it to the hospital in time..
Even as I write this I'm still unsure of what to do.
Let me know what you think? Do you have a pump? What's your experience? Are you thinking about getting one?