Taylor has always had a rough time with spasticity. Her muscle spasms have caused her to be in constant pain and although we have tried many medications, including oral baclofen, nothing has seemed to help or if it did help, it caused her to be a zombie, which in some ways is worse than being in pain.
We had been through a surgery when she was younger called a dorsal rhizotomy. This was supposed to be the “miracle” surgery that stopped her from having these terrible spasms, but to be honest, we saw no change, whatsoever. It was just another scar left on her tiny body that was already covered in more scars than most of us will ever have.
We had been hearing for years that the only thing left to help her was the baclofen pump by medtronics. A baclofen pump is round pump that resembles a hockey puck that is surgically implanted in the abdomen with a catheter that runs internally from the pump into the spinal cord. The pump is filled with a medication called baclofen that is continuously ran to deliver the medication directly into the spine instead of being taken orally, which causes the medication to lose it’s effectiveness before it does it’s job.
We listened to the doctors and did much research. It took us several years before giving up on controlling these spasms without another surgery and just going for it.
We had our first pump placed in El Paso, TX on June 11,2009.
The surgery was actually one of the easier surgeries we had been through. For the first time in her life, Taylor was out of
pain from the terrible spasms that had controlled her life.
It wasn’t long before all of the horror stories you hear about the baclofen pump started coming true.
It was during the worst of times, my husband was deployed to Iraq and I was home alone caring for our five children.
We noticed a bubble on Taylor’s spine where the incision was located from the pump placement. We spoke with the doctors about this on several occasions and were told it was probably a little spinal fluid, it would go away on its own. After a few weeks, Taylor began to get ill. They finally agreed to drain and biopsy the bump. As soon as it was drained, it filled back up, which led to another hospitalization for yet another surgery to check the pump internally.
We spent several hours in the recovery room and Taylor just wouldn’t wake up, which is not typical for her. She is usually awake before they even get her out of the operating room. It wasn’t until the doctor walked through the recovery room about five hours later that he noticed her still sleeping and freaked out, running to get his equipment. It turns out, they had turned the pump all the way up to watch it pump the medicine through and somehow forgot to turn it back down. They had overdosed her and we could have very easily lost her that day.
A few days later, my husband was injured in an accident in Iraq, and he was sent home to have surgeries. The day he was to arrive, Taylor once again started becoming ill and spinal fluid was leaking out of her incision on her spine. We were able to be home when my husband arrived, but immediately went to the E.R. after. Taylor had a fever that went from 99-105 in a matter of minutes. She was admitted for spinal meningitis. The only problem was, her surgeon was out of the country in India. Knowing that the infection was around the pump and catheter and the pump had to come out, nobody would touch it because she wasn’t their patient and they didn’t want to be involved in any lawsuits….
Can you believe it?!? A little girl is really sick, could die if nothing is done and every doctor is refusing to help. I had never been so upset with the system!
Finally,two days later, a pediatric neurosurgeon that knew if that pump didn’t come out, she would die, agreed to do it.
Now, I don’t know about you, but I’m more likely to sue for the behavior and attitude of not wanting to deal with it, then for someone actually trying to do something! Luckily for the hospital, we didn’t sue anyone.
We spent another week in the hospital, and Taylor was mad at life for taking what at least made her feel comfortable and took most of the pain from muscle spasms away. She was devastated and told us on several occasions that she honestly would have rather have died than be going through what she was now. To have the pain gone for such a short time and know what it was like to not feel it and then having it stripped away and the pain returning.
Fast forward two years….
Taylor is still struggling daily with the pain from spasms and cries and begs me to let her try this pump just one more time.
I must admit, I really did not want to have this baclofen pump placed, but honestly, it’s Taylor’s body and not mine. She put up a good argument as to why she wanted it, and even though she was a minor , I felt like I had to listen to what she wanted. She was hurting and no matter how hard I try, I’ll never understand the pain.
So, we agreed and here we are today. She is on a very small dose of baclofen via the baclofen pump. Fortunately, we have been able to keep this pump, but it leaves me with fear daily.
It has been 6 years since we had our second pump placed and Taylor now has a few problems that they have recently found are caused by baclofen pumps. She has severe scoliosis and due to her muscle weakness she had a neurogenic bladder, which had to be removed and she now has a urostomy.
The fear of complications from the baclofen pump run through my mind daily. Most emergency medical staff are not aware of the severity of withdrawals from baclofen if the pump were to malfunction.
We have been to several emergency rooms where we have mentioned the fact that Taylor has a pump and we are worried about possible withdrawals. Typically they act like it’s no big deal. It usually takes them an hour or so before they do the research and realize if this kid was really having baclofen withdrawals, she would be dead by now. They typically run back in the room after doing some research, panicking!
If you are considering getting a baclofen pump placed, there are many pro’s and con’s and it is a big decision. Please do your research wisely. If the spasms are so bad that you just feel like it’s not worth living through, by all means, do something for yourself and give it a try. If they aren’t too severe, you may want to think twice before jumping in.
How do you feel about baclofen pumps? Does anyone else have a pump story they would like to share with us? Comment below!