LittleLab4CF
Super Moderator
The past year has been an exercise in last ditch pain management. I'm certain that the medical professionals and manufacturers of Spinal Cord Stimulators and Intrathecal Pain Pumps would have to agree, albeit grudgingly, with their being near the end of preferred treatment. In a way it's not unlike the installation of a port. It's a great solution, and if we knew the future, many more would be installed earlier, avoiding the damage from IVs and PICCs. Spinal cord stimulators and pumps are implanted only after narcotics and surgeries fail to resolve the pain from whatever sources. I'm about to find out exactly what happens to improve the quality of my life and probably take away some of the pain medicine I so desperately trust to help me.
The efficacy of the devices is variable from individual to individual so they have devised a means to try out or trial each type of device. Again, because of the variables, you have to be evaluated by a Psychologist and even take a test or several. I started looking at these things in 2003. The devices preclude several types of imaging after the implantation. No MRIs and other stuff using electromagnetism, and I need frequent MRCPs. Now there are MRI compatible devices of both types.
Over a year ago now I began the process of trialing the Spinal Stimulator. I have been a fan of TENS units, external devices that send out an electric buzz that confuses pain signals. At a point the sensation of the TENS units lose their effectiveness. Spinal Cord Stimulators actually have lead wires and a few contacts, resembling the long tentacles on a squid, widening into paddles with the contacts dotted like the suckers would be placed in 2 rows. The best things about the stimulator are the epidural placement of the the wires and paddles, and you can wear it for a week to see what you get improvement in the pain level.
I trialled the Spinal cord Stimulator and sadly, the improvement easily could be my wanting it to work. I wasn't as prepared for a failure, as I thought. It had taken half a year to get the trial. It's not supposed to be so much hassle but it was.
I had to find another practice to trial the pain pump. The trial was just looking for problems, non-negative responses were what the trial determined. Anybody who's had a spinal tap can understand the dynamics of the trial, the difference being a long acting narcotic is injected into the spinal cord fluid. In retrospect I believe that the trial wasn't enough to make a decision one way or the other. If this doesn't work, the removal of it is probably something I would have to pay for. I can't stand the thought of it just remaining inert and inside me.
&&&&&&&&&&&&&&&&&&&&&. FAST FORWARD TO THE SURGERY &&&&&&&&&&&&&&&&&&&&
A window opened up for the trial and the implant surgery by a month, I am too late for second thoughts, and I have them. The big surprise with the trial was the fact that my legs wouldn't work. It was difficult to distinguish between the numbness and the residual pain of the injection. It was non-negative, meaning what exactly, I am not sure now that I think about it.
Slam bang I see the surgeon who's doing the implant. I'm not a good person to surprise. First, the pump resembles an overgrown hockey puck and I had been looking at something closer to a Zippo lighter. The implant literature showed the catheter threaded in the epidural space to the desired position, screwed to a vertebrae and sutured to the dura, the membrane that encapsulate the spinal cord and fluid. Not! The catheter is inserted into spinal canal at the base of the spine and noodled up to the desired position. They anchor it to the bone and thread it around front and attach it to the resevior pump, leaving the catheter nozzle to float, or possibly sink in the spinal fluid.
I've heard that people who have had a port implanted complain most about the skin being stretched over the appliance. Granted the skin is tight over the collar bone compared to the abdomen but I am beyond skinny at 120 pounds and now 5' 9". Hockey puck is faint praise for the pump and resevior unit at 88mm X 20mm (3.5" X .8"). I'm dismayed by the apparent lack of smooth contours, it's blocky and the edges are clean and square, none of which I see as quality, rather a dangerous and awkward chunk protruding from the left side of my abdomen, under the skin. If I bend over, the device wedges between my pelvis and the ribs.
There was a brief discussion about what would go into the pump, in fact every time I have looked into the advances in the technology, the same list of narcotics are typically used, the advantage being micro dosing directly on the affected nerves. The pump was implanted January 29th. When I went in to the appointment for the first fill there wasn't anything to put in the pump. The doctor had decided to go with a different drug altogether. Not a narcotic but a little known drug called Prialt!!!
I believe that I said that it is not a good idea to surprise me. I'd put a neurotoxin in my spinal fluid if I could study up on it first. Wait, Prialt IS a NEUROTOXIN! I'm all for advancing Science, but I don't like surprises. I now understand about the drug and the truth is I'm about to take another huge leap of faith. I don't have any yet, and already it's degenerated into a mess. My new pain management practice is claiming that the specialty pharmacy had been trying to reach us for a week, we have been hovering around the phones, primary and secondary and no Pharmacy had called. An appointment to fill the pump the first time at a surgical center is now a house call from a nurse. We're still waiting for a response from the pharmacy.
AAAAAHHHHH!!!
LL
The efficacy of the devices is variable from individual to individual so they have devised a means to try out or trial each type of device. Again, because of the variables, you have to be evaluated by a Psychologist and even take a test or several. I started looking at these things in 2003. The devices preclude several types of imaging after the implantation. No MRIs and other stuff using electromagnetism, and I need frequent MRCPs. Now there are MRI compatible devices of both types.
Over a year ago now I began the process of trialing the Spinal Stimulator. I have been a fan of TENS units, external devices that send out an electric buzz that confuses pain signals. At a point the sensation of the TENS units lose their effectiveness. Spinal Cord Stimulators actually have lead wires and a few contacts, resembling the long tentacles on a squid, widening into paddles with the contacts dotted like the suckers would be placed in 2 rows. The best things about the stimulator are the epidural placement of the the wires and paddles, and you can wear it for a week to see what you get improvement in the pain level.
I trialled the Spinal cord Stimulator and sadly, the improvement easily could be my wanting it to work. I wasn't as prepared for a failure, as I thought. It had taken half a year to get the trial. It's not supposed to be so much hassle but it was.
I had to find another practice to trial the pain pump. The trial was just looking for problems, non-negative responses were what the trial determined. Anybody who's had a spinal tap can understand the dynamics of the trial, the difference being a long acting narcotic is injected into the spinal cord fluid. In retrospect I believe that the trial wasn't enough to make a decision one way or the other. If this doesn't work, the removal of it is probably something I would have to pay for. I can't stand the thought of it just remaining inert and inside me.
&&&&&&&&&&&&&&&&&&&&&. FAST FORWARD TO THE SURGERY &&&&&&&&&&&&&&&&&&&&
A window opened up for the trial and the implant surgery by a month, I am too late for second thoughts, and I have them. The big surprise with the trial was the fact that my legs wouldn't work. It was difficult to distinguish between the numbness and the residual pain of the injection. It was non-negative, meaning what exactly, I am not sure now that I think about it.
Slam bang I see the surgeon who's doing the implant. I'm not a good person to surprise. First, the pump resembles an overgrown hockey puck and I had been looking at something closer to a Zippo lighter. The implant literature showed the catheter threaded in the epidural space to the desired position, screwed to a vertebrae and sutured to the dura, the membrane that encapsulate the spinal cord and fluid. Not! The catheter is inserted into spinal canal at the base of the spine and noodled up to the desired position. They anchor it to the bone and thread it around front and attach it to the resevior pump, leaving the catheter nozzle to float, or possibly sink in the spinal fluid.
I've heard that people who have had a port implanted complain most about the skin being stretched over the appliance. Granted the skin is tight over the collar bone compared to the abdomen but I am beyond skinny at 120 pounds and now 5' 9". Hockey puck is faint praise for the pump and resevior unit at 88mm X 20mm (3.5" X .8"). I'm dismayed by the apparent lack of smooth contours, it's blocky and the edges are clean and square, none of which I see as quality, rather a dangerous and awkward chunk protruding from the left side of my abdomen, under the skin. If I bend over, the device wedges between my pelvis and the ribs.
There was a brief discussion about what would go into the pump, in fact every time I have looked into the advances in the technology, the same list of narcotics are typically used, the advantage being micro dosing directly on the affected nerves. The pump was implanted January 29th. When I went in to the appointment for the first fill there wasn't anything to put in the pump. The doctor had decided to go with a different drug altogether. Not a narcotic but a little known drug called Prialt!!!
I believe that I said that it is not a good idea to surprise me. I'd put a neurotoxin in my spinal fluid if I could study up on it first. Wait, Prialt IS a NEUROTOXIN! I'm all for advancing Science, but I don't like surprises. I now understand about the drug and the truth is I'm about to take another huge leap of faith. I don't have any yet, and already it's degenerated into a mess. My new pain management practice is claiming that the specialty pharmacy had been trying to reach us for a week, we have been hovering around the phones, primary and secondary and no Pharmacy had called. An appointment to fill the pump the first time at a surgical center is now a house call from a nurse. We're still waiting for a response from the pharmacy.
AAAAAHHHHH!!!
LL