I have been looking for someone, anyone, who may be experiencing what I've been dealing with for the past four years: An Intrathecal Pain Pump combined with chronic spinal leaks.
After multiple spinal surgeries for herniated discs, which eventually resulted in my spine being fused from the sacrum to the thoracic discs, I was advised by my neurosurgeon to get an intrathecal pain pump to control back pain. During the first year after the implant surgery I was receiving no relief. Finally the pump was tested and found to be malfunctioning. Soon after, the original pump was removed and replaced. Three days after replacement surgery, I woke up in a fluid soaked bed. I had spinal fluid literally dripping from my surgery incisions like a leaky faucet. I always heard that spinal leaks result in very severe headaches that can only be eased by lying prone. Though I did have a low grade headache, it was nothing like I heard it should be. To this day, I have never experience the "typical" severe headache associated with a spinal leak. But what is severe is the intense withdrawal I experience.
My pump is filled with dilaudid and along with the spinal fluid I also leak the drug. My surgeon performed a blood patch to close the hole but it didn't work. Since then, I have been experiencing these leaks/withdrawals on the average of once a month. Over the course of the next four year I saw a multitude of pain management doctors. Each dealt with my pain issues in different ways but none would address the spinal leak. It was as if they didn't want to be associated with the problem created by another doctor. Finally I came to the conclusion that my only recourse was to have the pump removed. I know there are people out there who swear by the pain pump and I'm very happy they found relief, but mine was a problem from the start and caused more issues than pain relief. So, I began the gradual lowering of the amount of medication the pump delivers in an effort to have it removed.
I have been going through the lowering process for the past eight months. I began at nearly 4 mgs./day and am currently down to .7mgs./day (reducing at a rate of .4mgs/day each month). Next week I will be down to .3 mgs and can then have the pump removed within the next few months. I cannot express in words how hard this monthly lowering has been, especially past three months. But that is only part of my problem. Just when I finally begin to feel normal again ( 10 to 20 days after lowering)...something will cause a spinal leak and this whole nightmare begins again. I am very careful to watch the amount of weight I lift, bending, twisting my body, etc., in an effort to limit the leaks. I do take oral opiate medication in addition to the pump but even taking an extra dose does nothing to calm the hell of a spinal leak. Here are some of the symptoms I deal with:
Increase back pain radiating down both legs.
Severe weakness and exhaustion
Inability to control body temperature, i.e. severe cold...I CANNOT get warm
Even though I'm freezing, my skin feels as if it's on fire. Even my clothing feels like fire on my skin.
Dehydration. I drink bottle after bottle of water but still have dry mouth, skin and eyes, literally to the point that my mouth bleeds.
Joint pain. My whole body aches
Heightened senses, especially smell. My sense of smell is so acute that I get nauseated smelling hairspray.
Insomnia. Even though I am physical exhausted, I cannot sleep.
Low grade headache that will not go away.
Melancholy. This is a tough thing to explain bet I seem to experience feelings associated with past experiences, mostly sad.
Crying and sadness. Something as simple as a TV commercial will cause me to cry like a little baby.
There are many more symptoms, too many to list. After about 36 to 48 hours of this, I then begin to experience the usual symptoms associated with withdrawal. Trembling, nausea, vomiting, chills/sweating, etc. This entire episode lasts for anywhere from 4 days to a week, depending on how soon the leak stops. I have asked for help from my pain management doctor and primary care physician (PCP) but each thinks the other should be the one to address the problems. In the words of my pain management doctor when I asked for something to help with anxiety and sleep: "I will only address your pain issues. You should talk to your PCP for help with anything else." My PCP said, "These issues should be treated by your pain management doctor. At the very least he should be giving you additional oral medication to help you during the decreasing of the pump and spinal leak episodes." I can't tell you how helpless this makes me feel. No one will help me. This is the nightmare I've been dealing with for nearly three years but the past year has been pure hell. The only light at the end of the tunnel is hopefully this will all come to an end once the pump is removed.
I can't help but to think that I make my wife and everyone around me miserable. As hard as I try not to complain, that's all I seem to do. I seem to be either going through these episodes or sitting back in panic mode just waiting for the next one to happen! I scoured the internet, looking for someone who may be experiencing what I am going through...someone who truly understands and can relate to my experiences, but so far I have found no one. I'm hoping someone on this forum will read this and respond.