Mayo Clinic Connect
Has anybody had an implantable neurostimulator for chronic pain?
Liked by bekie, grandmaR
Yes I have,I had the Stim Wave antennas implanted on either side of my spine back in April. In the beginning it worked very well and I experienced a 60 % reduction in chronic pain levels. BUT I fell in the process injured my right side "hip,upper leg and right knee) so I am dealing with that right now. I am still wear the Stim Wave units, pushing hard to recover the progress that I made in the beginning. Billl Coombs
I had a Medtronic SCS from 2006 to 2008. It worked fairly well. I had it removed as it stopped helping me. I happen to run into a Medtronic rep at my pain management doc & he said they are much better now. No parenthesis, longer lasting batteries & smaller. You do a trial first to see if it helps and if so, it is implanted. It is general surgery to implant it. definitely worth a shot.
Just wanted to touch bases. As you know I had the Abbott Stimulator which tested good but upon installation and after 4 revisions gives me no relief.
I then had the DRG test and it was amazing. However, a few months after installation it lost its effectiveness on me also.
I’ve tried every tech in Oklahoma and now MN several times and they cannot get it to be helpful.
I’ve had them off for most of a year with tests when they try to readjust.
I was never told and did not have the initiative to find out that there were other options.
A friend asked if I had tried a Medtronic pain pump. I had to suggest it to my pain clinic and they said “yes, that sounds like a really good fit for you”. Can you believe they install them but never posed it as an option!
I had it tested and installed last January and it has been a literal life changer for me. It took a long time to get it titrated up, but it helps more than either/both stimulators combined and there is room for improvement as time goes on.
Just want to be sure you hear about the options before getting The DRG implanted.
I wish you he best of luck and am glad you found a med that helps.
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@cbrackle Hi Carl. I don't know how I overlooked your post. But at least I didn't delete it without reading it.
My SCS has been turned off for two weeks now and I haven't had any more pain than when it was on. I found a lidocaine cream on Amazon and tried it out last night. I don't remember what I paid, but it was way, way cheaper. It seems that my feet have burning pain when I lie down in my bed for the night, even though they hadn't been hurting during the day. That's essentially the only time I use the cream, though I've used it during the day in the past.
I've wondered about the possibility of a pump. I'm going to see the surgeon who will do the drg implant – if I decide to go forward with it – on the last Friday of this month, and then the following Monday I have an appointment with the pain specialist. I'm going to talk with them about a pump. Someone else here has a pump for Dilaudid and it's been a life changer, if I remember correctly.
Right now I'm really active, working in the yard and around the pasture, and doing maintenance on the house and barn and garage, and working on one of our vehicles. I'm on my feet a lot, so I expect to have more pain than if I sat in my recliner all day. I've been taking morphine sulfate contin 3x a day, up from just 1 or 2 a couple of months ago. I think the Imipram is helping, though it's just a low dose. The pain doctor might up the dose when I see him in a couple of weeks. For arthritis I take Meloxicam and Tylenol, and I suppose it's possible that it helps with the neuropathy pain. I suppose that doctors will have me stop taking some of those. Did the pump reduce the oral meds you were taking?
One thing I'm concerned about is that if the pump doesn't work out for me, my doctor would probably refuse to prescribe the narcotics that I'm taking now. But there's no point in worrying about that stuff until I try the pump.
I'll go online this evening after I get home from church and do a little research. It would surely be nice if I could get relief finally. Thanks for telling me about your experience.
Liked by Teresa, Volunteer Mentor, Justin McClanahan, Chris Trout, Volunteer Mentor
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
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.
Liked by wisco50
@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.
Liked by Teresa, Volunteer Mentor, wisco50
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
Liked by Jim, Volunteer Mentor
@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.
Liked by Teresa, Volunteer Mentor
Your secrets are safe with me! I appreciate everyone here telling it like it is, we can learn from each other's experiences. Peggy
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.
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”.
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.
cbrackle, Can you take Dilaudid without falling asleep? Peggy
The ER gave me Dilaudid for pain and I had hallucinations. That medication was awful for me. Then I slept for a long time.
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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