As I look back at the past year, my life has been changed irrevocably. With so many medical professionals telling me they could “all but cure” my cerebral palsy with a simple implant, I began to believe. The implant is called an Intrathecal (directly into the spinal fluid) Baclofen (an antispasmodic medication) Pump and is made by Medtronic. It is sold to those of us with spastic disabilities as a miracle. It is placed under the ribcage in the front of your body and a lead is passed through to the spine which pumps the liquid baclofen directly into the cerebral spinal fluid.
I was promised that within three to four months, with physical therapy I would be walking almost normally and would be so much more functional. At first I said, “Absolutely not! No one is messing with my spine. I am completely functional and there is nothing I want to do that I cannot including, remodeling my own house.” But, my doctor kept pressuring me to try the test and promising that I would even be a better mother because I would be able to run and play in the yard with my daughter without the fear of falling down. After several months, and several arguments with my doctor, I finally agreed to the test.
Except for a severe headache for several days, the test went well. With much apprehension, I finally agreed to the procedure and it was scheduled for May 9, 2007. I did not know that I would never be the same again. I expected to be “cured” and instead wound up feeling “conned.”
The procedure is scheduled as an outpatient one but in my opinion having been through it should be at least an overnight stay in the hospital. You feel as if you have had a through and through gun shot wound with the lead passed through to your back. I also feel it would have been better to stay overnight to monitor my reaction to the intrathecal baclofen. But, at any rate, I woke up at about 2:30PM and was back on the road being driven the 50 miles back home. When I got home I did the only thing I could do under the circumstances, which is take pain medication and go to bed.
The next morning I woke up very sick to my stomach, but excited because all of the spasticity in my legs was gone and for the first time in my life my feet were flat on the ground. I know having your feet flat on the ground doesn’t sound like much to most people but to me it was a “miracle” just as the doctors had said. The excitement didn’t last long however because it gave way to a round of severe vomiting, headache and an inability to move my head without excruciating pain.
As soon as I could, I called the doctor and insisted that I see him right away. I explained the problems I was having and according to my husband I looked half dead. We made our way back down to the doctor 50 miles away with me lying down in the passenger seat because sitting up made the headache and neck pain more than I could bear.
When I saw the doctor that day I was told this kind of reaction was not unexpected to drink beverages with caffeine and take the pain pills I was prescribed that this should take care of the pain. This suggestion encouraged an addiction to Coca Cola that still goes on today.
But, the pain in my neck and head did not go away. I was misdiagnosed with a spinal fluid leak not once or twice but four times and had to undergo four spinal blood patches over the next two months in which the spinal fluid is injected with your own blood to help stop the leak. If this had actually been the problem, the head and neck pain should have gone away with the first or at least the second patch. As it was, the doctor was looking at me for the two months in which I had this “miracle” implant as if I were a complete mystery. I found this to be more and more alarming as the time went by.
During the time that I was being told that I had spinal fluid leaks, the doctor also turned down the amount of medication I received every week trying to alleviate my pain and make it easier for me to move. The entire time in which I had the implant I was completely unable to sit up. The pain in my head and my neck were beyond tolerance.
After the fourth spinal blood patch was completed and my suffering was unrelieved the doctor decided I must have rebound spasticity. I had no idea what rebound spasticity was. It had never been described as a possible side effect of the medication or the procedure. Nice to know my spine had been evaded four times for no apparent reason.
With a three year old in the house it was very difficult to manage. If her father were a different kind of man, I would have wound up in court with her being taken away from me because I was unable to take care of myself much less my family. Although, throughout the ordeal he remained very angry at me for having a procedure he said he would never have done to himself, he was always there. He worked as much as he could to try and augment our ever increasing debt and manage our household.
The medical bills were piling up, I was unable to work, my family could not rely on me for anything and I, who was always so independent, was now totally dependent on my family to take care of me. I had to be driven to and from the doctor and physical therapist several times a week. I had to lay the seat all the way down in the car because I could not sit up without so much pain in brought tears to my eyes.
To this day, I bless the existence of my father and mother in law. They were always there. They helped take care of my daughter, for whom I did all this in the first place. My father in law ran me down to the doctor’s office 50 miles away every other day of the week for two and a half months. He waited through procedure after procedure and physical therapy session after session. He never waivered in his support either emotional or financial, with me out of work due to this pump he helped to pay our bills, more than once. He and my mother in law picked my daughter up every day and took her to either their house or school and made sure she never felt anything but love the whole time. I can say I think she dearly missed her previously much more active mom.
Finally, on the last week of June 2007 and after many hours of pain, suffering, tears and self recrimination I insisted that the doctor remove the infernal device from my body so that I could have my life back. Back I went for the 50 mile trip to have the device removed. The doctor who implanted it was very apologetic and stated that he had never had this happen before after several of these had been done. “But,” he stated, “After all these things happen.”
I know all of the doctors and therapists involved in pushing this procedure, and I say pushing it because of how hard they worked to persuade me to do it before I would agree, meant nothing but well, however it has turned out to be a nightmare that apparently has no end. Although, I have had the implant removed and received heartfelt apologies from all concerned, I still have headaches and stiffness in my neck which was never part of my cerebral palsy before. The headaches are usually manageable with medication but sometimes the only way to get relief is to just go to bed, pray for sleep, and hope for the best.
I did contact a lawyer while this was going on and was informed that because of the changes in the law I have no legal recourse for all that they put me through. If I had sustained injuries in an automobile accident that left me with neck pain and headaches for the rest of my life I could do something about it but because the problem was caused by the medical profession there isn’t anything I can do about it due to the changes in the malpractice laws. To top it all off the hospital has sued me for payment of my medical torture and the anesthesiologist who performed the procedure is threatening to do the same.
I still have not returned to my former ability to do everything. I tire much more quickly than I ever did before. I have lost a great deal of my muscle mass because I couldn’t move for so long and it is harder to get around than it ever was in the past.
It has been a little over a year.perhaps one day the headaches and neck pain will go away. I don’t think my mistrust of the medical community that cares for those of us with disabilities ever will.
