SCI: Spinal Cord Injury -Inthrathecal Baclofen Pump Experience Part 4: Explant
In my documented continuing adventures with my intrathecal baclofen pump, I wanted to provide the lastest updates:
Throughout my journey perhaps the most surprising and unmentioned aspect of having an implanted device is the feeling that you lose control over your life. Meaning, whenever I need a dosage increase, decrease, regardless of what "I" felt I needed, I was at the mercy of the physicians who would only incrementally titrate the levels at a rate they were "comfortable" with. Even more frustrating is the fact that you become chained to the pain management doctor, and every time you wish to see them they require a co-pay so it becomes expensive. There were times I saw the Pain doctor twice a week or more and they required a $20 co-pay for each visit.
The other unmentionable is how even something as routine as an MRI becomes complicated because even though the devices are rated to withstand normal MRI imaging, the imaging facilities will not perform the MRI on you unless you have a pain doctor either standing by to monitor the pump after the MRI, or you have an immediately scheduled appointment at your facility they can verify.
Perhaps one of the most painful and frustrating aspects of having my pump implanted was that the doctor who implanted it put it in my left buttocks. Typically they place them in the abdominal area, but this physician said it would be less noticeable would have a shorter catheter to minimize problems, and would not be that intrusive.
BOY WAS I WRONG!
Having the pump in my buttocks caused it continually press on my lower spine nerves which gave me horrendous sciatic pain when sitting, and made laying on my back virtually impossible due to nerve impingement in my lumbar spine. My only choices were to lay on my side or my stomach at night time. The former was made difficult because I have hip joint pain and I can't lay on my stomach because I use a CPAP. So I was in a no-win situation.
After years of struggling with dosage titration and overall frustration with my Baclofen pump I opted to have it shut off around August 2011.
Due to scheduling, life, moving/etc I was not able to have it explanted (removed) until last week (Nov 16th 2012).
The procedure itself was relatively uneventful.
You go into the hospital, and put on your gown. They ask you about 100 questions. The nurse puts an IV in your arm, and then the anesthesiologist says he is going to make you sleepy. After about 3 minutes you pass out and wake up in the recovery room.
Attached are some post-op photos.
Now feeling emancipated from the chains of my baclofen pump, The Neurosurgeon came to speak with me several hours later.
To my COMPLETE SHOCK and dismay, he told he he found the reason why my I had so many problems with the pump over the years. He said that the catheter was not connected to the medtronics pump! He stated he had to dig around in my sacrum area to find the origin of the catheter so he could pull it out of my spinal intrathecal space. At the moment I was in shock and he had to move onto the next surgery so I did not have time to ask, but I have a follow up appointment in a few days to find out what the operating report says.
This leaves me angry and confused. Because I walk with a cane I have no idea how it would "magically" not be connected. This confirms why I had so many lower back and increased spasticity problems, complete intestinal and bowel shutdown, the lower leg nerve shocks, headaches and "whoosh sound", 100% lack of sexual function, and the plethora of other problems I had. In essence the drug went directly into my body.
I am at least thankful I have it out of my butt because I can finally lay on my back after 3+ years of nightly pain; I literally loathed the idea of going to sleep prior. Sitting is more comfortable now and my sciatic pain has significantly decreased.
The recovery from the explant was minimal. I had to lay down for a few days afterwards, but I didn't have any spinal headaches this time. I believe I picked a good neurosurgeon this time. My incision was very clean, and there was minimal soreness. It was extremely tingly to the touch afterwards, but not an "excruciating" pain. Essentially your lower back nerves are on HIGH ALERT, so you feel everything for a few days afterwards.
You cannot take a shower for about a week which is awkward. Even then you have to wrap yourself in cellophane to keep the incision dry. After about 10 days you can take a normal shower though.
In sum, I'm glad to be done with it. I may never know if it "would" have helped me because of the fact the catheter was not connected.