Implantable neurostimulator for chronic pain

Posted by zjandre @zjandre, Apr 13, 2016

Has anybody had an implantable neurostimulator for chronic pain?

I'm just flabbergasted when I read about the medicines that some of you are taking … and they are helping you function without being so distracted by pain. If I took them, I would fall asleep (dilaudid, morphine, oxycontin, et al). I can take 1/2 of one tramadol during the day, or 1/2 of one codeine at night (it puts me right to sleep too). Did you start with tylenol and build up to those medicines as your condition progressed and the pain intensified? Peggy

REPLY
@pfbacon

I'm just flabbergasted when I read about the medicines that some of you are taking … and they are helping you function without being so distracted by pain. If I took them, I would fall asleep (dilaudid, morphine, oxycontin, et al). I can take 1/2 of one tramadol during the day, or 1/2 of one codeine at night (it puts me right to sleep too). Did you start with tylenol and build up to those medicines as your condition progressed and the pain intensified? Peggy

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I can't speak for every one, but I had been on oxycodone for 20 some years, then they added oxycontin to the program the last 2 years. You build up a resistance to them. It was at that point I told the doc to get me off of them. It took a couple of years to do it, with the help of my pain specialist. But I've now been off of them for about a year now. If you can live without them. It's much better. But sometimes when you're in pain, you will do anything to make it lessen.

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@pfbacon

I'm just flabbergasted when I read about the medicines that some of you are taking … and they are helping you function without being so distracted by pain. If I took them, I would fall asleep (dilaudid, morphine, oxycontin, et al). I can take 1/2 of one tramadol during the day, or 1/2 of one codeine at night (it puts me right to sleep too). Did you start with tylenol and build up to those medicines as your condition progressed and the pain intensified? Peggy

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@pfbacon Hi Peggy. Oh my! When and what did I start with? Before peripheral neuropathy hit, I only took Ibuprofen for some arthritis. After having a ladder dump me from 12', I took Percocet for a while. I had two compression fractures in my lower back, and I think I broke something in my arm. Percocet was just a short term medication, but I would take one at bedtime if my back was hurting from doing too much. I rarely take any – maybe once in a month.

Then came neuropathy. My PCP had me try the standard meds for it, but nothing helped. Some didn't do anything and the others had side effects. At some point I started taking morphine sulfate contin, and was up to 30mg 3x a day. While I was taking morphine, I tried Cymbalta, which seemed to help a little. I decided to taper off the morphine to see if it was helping. After getting off it, I realized that it really was giving me pain relief. I started taking it again, and only went up to 15mg, 3 x a day. Then I started seeing a neurologist and he had me try a bunch more, with the same result. Then, on to a pain specialist, who had a list of off label meds for me to try. I think he's the doctor who told me about the scs. I had around 75% relief. It was SO great!

I continued taking morphine because I still had pain, though not as much. The scs seems to be effective for around 3 months, and then I have to have the Abbott tech adjust it. I've gone through that three month cycle for two years, and I think that it's just not working for me.

I turned it back on yesterday after having it off for two weeks. I started taking desipramine, and it was helping, but I was going to the bathroom up to 24 times a day, so I'm now taking imipramine, which helps (I think). So, I take morphine sulfate contin and Imipram for the neuropathy pain. I take Meloxicam and Tylenol for arthritis.

I don't know what to do next. The drg stimulator is on the table, but I'm not yet comfortable with the idea, so I'm going to talk with the pain specialist about weighing the benefit of the stimulator against having a pump implant.

I have a fairly long list of medications, some for the neuropathy, for arthritis, Clonazepam for keeping my legs still at night, Prilosec, Dilantin for tachycardia, allergy meds, myrbetric to control urinary urgency, and two antidepressants, along with vitamins, etc. Sorry. Too much information!

I would love to be able to be pain free without narcotics, but for now that seems to be the only solution. I'd also like to be able to take it without the stigma. To listen to the politicians, I must be just one step out of the gutter. All of a sudden, medications that have been treating pain effectively for aeons are being denied. I'm not pleased with the change in rhetoric that I hear from my doctor. If opioids are now being demonized, how can the medical community justify having prescribed them freely and liberally, especially for people with intractable chronic pain?

Oops! Another soap box. But I think you can see the frustration.

I think I've gotten a bit sidetracked, Peggy. I'm sorry. But I think that somewhere in all of my words, hopefully I've addressed your question.

Jim

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@jimhd

@pfbacon Hi Peggy. Oh my! When and what did I start with? Before peripheral neuropathy hit, I only took Ibuprofen for some arthritis. After having a ladder dump me from 12', I took Percocet for a while. I had two compression fractures in my lower back, and I think I broke something in my arm. Percocet was just a short term medication, but I would take one at bedtime if my back was hurting from doing too much. I rarely take any – maybe once in a month.

Then came neuropathy. My PCP had me try the standard meds for it, but nothing helped. Some didn't do anything and the others had side effects. At some point I started taking morphine sulfate contin, and was up to 30mg 3x a day. While I was taking morphine, I tried Cymbalta, which seemed to help a little. I decided to taper off the morphine to see if it was helping. After getting off it, I realized that it really was giving me pain relief. I started taking it again, and only went up to 15mg, 3 x a day. Then I started seeing a neurologist and he had me try a bunch more, with the same result. Then, on to a pain specialist, who had a list of off label meds for me to try. I think he's the doctor who told me about the scs. I had around 75% relief. It was SO great!

I continued taking morphine because I still had pain, though not as much. The scs seems to be effective for around 3 months, and then I have to have the Abbott tech adjust it. I've gone through that three month cycle for two years, and I think that it's just not working for me.

I turned it back on yesterday after having it off for two weeks. I started taking desipramine, and it was helping, but I was going to the bathroom up to 24 times a day, so I'm now taking imipramine, which helps (I think). So, I take morphine sulfate contin and Imipram for the neuropathy pain. I take Meloxicam and Tylenol for arthritis.

I don't know what to do next. The drg stimulator is on the table, but I'm not yet comfortable with the idea, so I'm going to talk with the pain specialist about weighing the benefit of the stimulator against having a pump implant.

I have a fairly long list of medications, some for the neuropathy, for arthritis, Clonazepam for keeping my legs still at night, Prilosec, Dilantin for tachycardia, allergy meds, myrbetric to control urinary urgency, and two antidepressants, along with vitamins, etc. Sorry. Too much information!

I would love to be able to be pain free without narcotics, but for now that seems to be the only solution. I'd also like to be able to take it without the stigma. To listen to the politicians, I must be just one step out of the gutter. All of a sudden, medications that have been treating pain effectively for aeons are being denied. I'm not pleased with the change in rhetoric that I hear from my doctor. If opioids are now being demonized, how can the medical community justify having prescribed them freely and liberally, especially for people with intractable chronic pain?

Oops! Another soap box. But I think you can see the frustration.

I think I've gotten a bit sidetracked, Peggy. I'm sorry. But I think that somewhere in all of my words, hopefully I've addressed your question.

Jim

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Thank you, Jim. I am getting new doctors in the state we're moving to and they treat patients like we're addicts and criminals until we prove ourselves innocent. Pharmacists and hospitals are doing it too, and my insurance company is using the 'opioid crisis' to withhold all kinds of medicine from everyone they can – even medicines that they have covered for us for years. One of my pharmacists said that the Pharmacy Board has threatened to take her license unless she reports 'suspicious activities' to them. Remember the book 1984 by George Orwell? We are living it and it's scary for people who have chronic pain. We need to write letters to our congressmen. Peggy

REPLY
@pfbacon

Thank you, Jim. I am getting new doctors in the state we're moving to and they treat patients like we're addicts and criminals until we prove ourselves innocent. Pharmacists and hospitals are doing it too, and my insurance company is using the 'opioid crisis' to withhold all kinds of medicine from everyone they can – even medicines that they have covered for us for years. One of my pharmacists said that the Pharmacy Board has threatened to take her license unless she reports 'suspicious activities' to them. Remember the book 1984 by George Orwell? We are living it and it's scary for people who have chronic pain. We need to write letters to our congressmen. Peggy

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@pfbacon Peggy, I understand why people are looking for their meds on the street. Trouble is they don't accept Medicare. I could get a card for medical marijuana, but the fees and doctor costs are prohibitive. And my PCP told me that if I were to use cannabis, he wouldn't prescribe morphine sulfate contin and Clonazepam for me. I did get some street marijuana, and some from a legal dispensary, but they didn't have any effect on the pain. (I didn't tell my doctor.) The interesting thing is that the pain specialist said he thought it would be a good thing to try, but the group of doctors he's with elected not to prescribe cannabis.

If I had more money, I would probably be trying some of the cannabis products, but they're too expensive for me, living on Social Security. I've never used street drugs (except for the one time with marijuana), and my two brothers were destroying their lives with alcohol and drugs. They've both been clean and sober for quite a few years now, and I don't want to go down that risky road.

My PCP and pain specialist both know that ms contin is the only medication that we've found that has any effect for me. My PCP told me that he won't increase the dosage, even though I could double it and still be within the limit the clinic has imposed. His reason is that I would be building up a tolerance, and that morphine sulfate contin doesn't actually treat pain. I guess they think we're all stupid or something. If it doesn't actually treat pain, why did he prescribe it for pain several years ago? But it does no good to try to discuss it with him. He'll be retiring in a few years and maybe I'll be able to find a doctor who can think for himself and not just buy into the political correctness.

Jim

REPLY
@jimhd

@pfbacon Peggy, I understand why people are looking for their meds on the street. Trouble is they don't accept Medicare. I could get a card for medical marijuana, but the fees and doctor costs are prohibitive. And my PCP told me that if I were to use cannabis, he wouldn't prescribe morphine sulfate contin and Clonazepam for me. I did get some street marijuana, and some from a legal dispensary, but they didn't have any effect on the pain. (I didn't tell my doctor.) The interesting thing is that the pain specialist said he thought it would be a good thing to try, but the group of doctors he's with elected not to prescribe cannabis.

If I had more money, I would probably be trying some of the cannabis products, but they're too expensive for me, living on Social Security. I've never used street drugs (except for the one time with marijuana), and my two brothers were destroying their lives with alcohol and drugs. They've both been clean and sober for quite a few years now, and I don't want to go down that risky road.

My PCP and pain specialist both know that ms contin is the only medication that we've found that has any effect for me. My PCP told me that he won't increase the dosage, even though I could double it and still be within the limit the clinic has imposed. His reason is that I would be building up a tolerance, and that morphine sulfate contin doesn't actually treat pain. I guess they think we're all stupid or something. If it doesn't actually treat pain, why did he prescribe it for pain several years ago? But it does no good to try to discuss it with him. He'll be retiring in a few years and maybe I'll be able to find a doctor who can think for himself and not just buy into the political correctness.

Jim

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Your secrets are safe with me! I appreciate everyone here telling it like it is, we can learn from each other's experiences. Peggy

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Yes and had it removed a year later. Trial went fine but it was a different device. They placed Medtronic precision, I think it was. Nevertheless, after several adjustments, I had it removed.

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@jwhite59

Yes and had it removed a year later. Trial went fine but it was a different device. They placed Medtronic precision, I think it was. Nevertheless, after several adjustments, I had it removed.

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My bad. It was Boston Scientific. The trial was one type device the implant was another, paddles. I had high hopes for it helping me but was very disappointed. I have scoliosis so that might have been a factor. I’m new here on the forum, so, “hello everyone”.

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@jwhite59

My bad. It was Boston Scientific. The trial was one type device the implant was another, paddles. I had high hopes for it helping me but was very disappointed. I have scoliosis so that might have been a factor. I’m new here on the forum, so, “hello everyone”.

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Hi @jwhite59
In Oklahoma I originally had the standard leads. After the first failed install and the first failed revision they decided to put in paddle leads which then rotated 45 degrees so did not face my spine. Then a neurosurgeon did a laminectomy but “could not get the leads high enough due to scar tissue”
The fourth revision done here in MN was done perfectly and put into the original target zone, but for 3 years they have not been able to adjust it to be effective.
Not pushing it, but the only effective treatment
Since oral Dilaudid has been the Medtronic pain pump (which only case pumps Dilaudid). Changed my life.
I wish you the best of luck finding your solution.
Carl

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cbrackle, Can you take Dilaudid without falling asleep? Peggy

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The ER gave me Dilaudid for pain and I had hallucinations. That medication was awful for me. Then I slept for a long time.

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@candrgonzalez

The ER gave me Dilaudid for pain and I had hallucinations. That medication was awful for me. Then I slept for a long time.

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Yes, I was on a very high dose of dilaudid for about 6 years till the “Opiod Crisis”. No side effects for me.

Everyone reacts different to different meds. Something pain docs have a hard time realizing even when it is presented to them.

Something the crackdown on opiods just makes harder.

The pain pump can deliver other meds too, not just dilaudid.

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