Has anybody had an implantable neurostimulator for chronic pain?
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Ah, I love it, HAHA, excuse my sarcasm! The "latest thing" is to say narcotics do not help chronic pain. I have NO idea where this evolved from, what studies have been done on this, blahblahblah. I have had one or two people say this to me and I get very quiet, rather angry and tell such "experts" that I would rather enjoy if they truly suffer from significant chronic pain for a few months and try various meds, then tell me what their opinion is! NONE of this was deemed "valid" until the current opioid crisis became the flavor du jour. I am not saying there isn't a drug problem in America. I am saying very little of it actually has to do with legally treated chronic pain patients. Studies DO bear that out!
I have written previously regarding my Camptocormia and the long trail that I followed to finally get the proper diagnosis. Among the recommendations for relief was a neurostimulator implant. I went through the required interviews (for the insurance company) with a neurologist, and a psychologist. I must have passed because I was sent to Medical University of South Carolina, Charleston. I had the stimulator (believe the brand was either Templeton or St.Jude, but then again with my memory it might have been something else) implanted in my left hip, about 4 inches below the belt line. There are two small wires that are threaded on either side of the spine and can run the full length of the lumbar joints depending on where they want to be able to distribute the stimulations. Discomfort from the procedure was minimal and recovery was quick (up and walking as soon as anesthesia wears off). There was a small control, about the size of a car remote fob. I met with a company representative a couple of times, in my hometown, to work with the settings. They have a laptop that they connect and depending on where you feel the need for the stimulations, and the intensity, they adjust your controller to fit. If one is suffering from “pain” along the spine I can see how this could be a solution, but does not address Camptocormia. I wore it for about 5 years and only used it the first 18 months to 2 years. While I was wearing the implant I could not get an MRI if needed. The newer models might not have any such restrictions. I decided to have it removed while I was fairly healthy and didn’t yet need an MRI. Removal was easy. I have read where people who were experiencing intense back pain from things like falling off their horse, were greatly helped by the implant, to the point of returning to their previous activities. I would recommend giving it a look.
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I had a Burst DR spinal cord stimulator implant in May of '2017 from St. Jude. Shortly after the implant, St. Jude sold the system to Abbott.
I was told ahead of time that it would be MRI compatible. I was in a surgery gown, ready to walk into the MRI room, when the radiologist had me look on my controller to be sure he could go ahead. It said "MRI not advised". That was in January this year. Needlessly to say, I was beyond angry with the company that had said that they were the only one who were compatible. If I were a litigious person, they'd have heard from my attorney for false advertising.
The Abbott rep told me at that time that an update had been generated to make it MR compatible and that he would be approved to upload it to my controller. Six weeks passed by, then six months, then at ten months, he called me and my scs is indeed MRI compatible. Finally!
So, I've had two long overdue MRI'S done a couple of weeks after the update. In the meantime I've been trying more pain meds, and six weeks ago he prescribed Imipramine. It's the first medication that has helped me with no side effects. After a decade of increasing chronic intractable pain, I can go through a day with only level 2 pain. Bedtime is a different story. With almost no pain all day, when I lie down pain hits immediately, though not as bad as had been pre Imipramine. During the time I've been testing the effectiveness of the Imipramine, I didn't start any other medication and I didn't have the adjustment of the scs so that we could judge the efficacy of the new medication. Now that the doctor and I know that Imipramine is my new best friend, I can set up an appointment with the Abbott rep. I know it's time.
I've mentioned in other discussions that after the first year, I've needed an adjustment of the scs every 3 months. The pain decreases for a while after the tweeking, but by 3 months, the pain has escalated. I was due for an adjustment six weeks ago. I'm hoping that it will be effective enough to reduce the residual pain present since taking my 4 little pills.
Obviously, every body is unique in that what meds work for some people they're useless to the rest of the chronic pain sufferers. I know how frustrating it's been for all of my doctors not to be able to find the right medication or combination of meds my body needed.
In the midst of all of the trial and error for a very long time, one medication has been a constant, that being morphine sulfate contin, and I'm afraid that since I've found Imipramine, the doctors will want me to stop the morphine. The big O scare is affecting a lot of people who have had a legitiment long standing need for opioids and narcotics. Many have been forced to stop taking those meds, even though they have managed their pain for years with the help of narcotics. My limit was cut in half because of politics. But I won't go there for now.
I know for sure that the stimulator implant remains an important part of my pain management. It targets my feet and ankles, though it doesn't do anything for my arthritis in various places. For that I take Meloxicam and Tylenol. The pain in my right thumb joint had become so severe, I had a cortisone injection there. It stopped most of the pain, but the pain is going to have to become unbearable before I get another injection. It was excruciatingly painful!
We have to keep trying meds and procedures, often for a really long time, until we happen upon something that works. I pray for strength and patience for all of us who are dealing with chronic, intractable pain.
wisco50 – I too suspect that this opioid crisis is trumped up, probably to distract Americans from the fact that cigarettes are still the biggest and most expensive killer in the U.S. I have been interrogated by pharmacists and doctors' nurses, my medicine has been held up, and my insurance company has used the 'controlled substance' status to delay paying for my Neuropathy meds — they are treating patients like we're all addicts until we prove ourselves innocent. Peggy
I hear you, and I am sorry you are also dealing with this situation. Last year I had a Costco pharmacist refuse to fill a prescription as he thought the dose was "too high" for someone over 65. He didn't care that the MD prescribing it has known me and my med situation for years, that I have never had a negative reaction to it, etc. It was a sleep med and my insurance won't cover it and it became very expensive over the past five years. No apparent reason, old generic drug. I finally found Costco could get it for a price I could afford. So instead I am using a very cheap generic medication not meant as a sleep med, but it usually works – though not as well and with more side effects. I am hoping if my pain is controlled then eventually I won't have as much trouble sleeping.
I think you should have at least filed a complaint with the company, FDA, etc. That's inexcusable and could have caused you significant damage. At this point I am looking at Medtronic vs Boston Scientific for stimulators.
You can look up my story if interested. I think Jim has probably heard it enough.
Don’t forget to look at the Medtronic Pain Pump too. As many have said, diff things work for diff people.
I’m going to be looking into having my both my Abbot/St. Jude SCS and DRG stimulators removed after 4 years as they have never worked well, and the techs cannot seem to adjust them to be effective.
My pain pump is great, but varies in the % of relief or my pain varies in intensity.
Just want to be sure that everyone knows what other options there are out there. No one informed me and I was not in any state of mind to research at the time.
Carl, I had a conversation with a doctor about the possibility of a DRG. She advised me to hold off on it until I tried a few more things. She's an expert on stimulator implants, and she discussed some ways to adjust the scs with the Abbott rep. I'll probably see him next week for an adjustment.
I haven't read or heard much about the DRG so I'd like to know what you thought about it.
I had a Medtronic Stim unit implanted for over a year back in 2014 and had it removed after a year of having it adjusted over and over. I had a temporary implant that I felt helped so I went and had permanent implant. I now know that it was premature in feeling it was working. I guess I was holding on with a feeling that I was getting relief. It ended up being a false relief because I wanted it to be. I now have major scar tissue that is causing pain in different ways.
I would highly recommend that you do plenty of research, look at the surgeons results, try to get testimonials before going under the knife. Once you are cut, you can’t go back ! Good luck
I have Bost. Scientific wavewriter since December for 8-9 levels of lumbar pain. It worked well for me overall and especially in eliminating pain spikes. However my left cluneal nerve is now emitting 8-9 pain most of the time. Pain doc is recommending and researching using Stimwave as a second device. Any one else have 2 devices or had some kind of cluneal nerve impingement repair surgery? I am trying to avoid 3-level spinal fusion. I need 2 pain pills a day and I want to get off them and just use med mar when I need to.
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