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Thinking about stimulator or pain pump for chronic lumbar pain
I had a spinal fusion in 2006 and have been dealing with chronic pain ever since... I stopped using opioids later that same year and ever since my pain has largely been uncontrolled. I've tried TENS units, all kinds of other meds, physical therapy, daily exercise, and psychiatric interventions and my life still is very limited by problems caused by chronic pain. Im thinking about a stimulator or a pain pump but curious of others experience. I regret my fusion so im very reluctant to have anymore surgery. I was totally against a pain pump until I found out that medication doesn't cross the blood brain barrier as I developed opioid dependence and misuse following my fusion. I dont mind being dependent on a medication but I dont trust myself to self regulate my use of oral pain medications for more than a few days max and that's only with having my spouse overseeing what im taking. Im specifically interested in how painful the procedures are as again i dont trust myself to be on oral opioid meds for any extended periods of time.
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So many different experiences with SCS's and pain pumps. I have been trying to get pain relief from my pain pump for over two years. My PM doc is very non-empathetic and matter of fact, not really ever offering any kind of helpful suggestions. My visit yesterday left me almost shaking and feeling totally at a loss for words. I went in and had my pump scanned by the med assistant. The doc came in and checked the readings and said, "you're almost out of medicine". I told him I was supposed to have had the pump refilled ten days ago by some home health nurse, but told me they were unable to get my Dilaudid in time for my appointment and would have to reschedule. Standing there in his full laboratory garb, the doc said, in a very loud voice, "Why didn't you tell us"? I told him I wasn't aware that there wasn't communication between her and his office. "Why would we have communication?!". I said I didn't know, I was just a patient trying to get some pain relief. He kept reiterating that I was supposed to keep them in the loop. He couldn't keep managing my pump if I wasn't able to keep his office updated. By this time I was feeling pretty small and intimidated. I really didn't know what else to say. "Do you want me to mange your pump?!", he said. "Certainly", I replied. So, it's back to his office tomorrow to get the pump refilled. It will be just "yes, sir", and "no sir". Happy day to all of you out there.
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1 Reaction@heisenberg34
What a terrible doctor!! I am so sorry for your experience with this doctor and his lack of empathy and compassion. Are you able to get a different doctor to help you manage your pain pump?
@heisenberg34
If you have your experience many other patients do, too. Do they tell you at that doctor’s office that patients are responsible for the pain medication resupply process before appointments?! Do they treat the medication like a prescription refill that is then sent to the doctor for medical appointments to replenish? The doctor should have clear communication with all patients with pain pumps what the process is and what the roles and responsibilities are. They should not assume patients know how this process all works.
@mattman1022
Wow! You have been through so much! Good to know about the pain pump working better than the stimulator. I have had c5-c7 and l3-l5 fused with hardware and may have more surgeries in my future. I deal with pain daily and nothing has helped orally. In the near future, I will need to look into more pain management options.
@mattman1022
With so much fused in your spine, how do you maneuver and bend to pick things up and get in and out of car? I struggle with 2 levels fused in neck and 2 in my lumbar spine. Body mechanics definitely change with fusion. My arms and legs/hips/glutes are weak which makes movements harder and I hurt myself constantly. My knees also hurt. I am a 56 year old female.
@dlydailyhope Thank you. I have been trying to find a different doc who can manage my pump, but it's slim pickings here in Dover. I would likely have to travel a couple of hours to Baltimore or Philadelphia. I do not travel very well with this pain. An hour is about my limit. But, I will keep looking.
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1 Reaction@dlydailyhope I am usually in so much pain that I tend to forget things not long after they are told to me. I assumed that the Home Infusion people had contacted my doc in order to get my info. I certainly didn't contact them. It seemed like a good deal to me at the time. No need to go thirty miles to get the pump refilled. Well, last week they told me that they had to cancel my visit because they could not secure my medication. If that's going to be the case, I will stick with going the thirty miles every three months to get it refilled.
@heisenberg34
I understand and relate with what you mean about pain affecting concentration and memory.
Did the home infusion company say why they could not secure your medication? Did they successfully get in the past and this was a new change or did they never do the infusion/pump refill?
What is the medication used in the pump? How is the pump refilled? I would think there should be options closer to you to get the pump refilled or for the infusion business to be able to have you receive the medication delivered at home so they can do the refill at home. Have you checked with the pharmacy that controls the medication needed and your insurance company to look into options available to you at home or closer than 30 miles?
@dlydailyhope So many questions. The home infusion co refilled the pump once. It’s done by injection into a port on the pump. I get Dilaudid. They never explained why they couldn’t get it. Since I’m almost out, I didn’t want to med around, waiting for them. A thirty mile trip once every three months isn’t too bad. Gets me out of the house.
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