After 10+ years of chronic back pain, resulting from failed spinal surgeries, spinal stenosis and osteoarthritis, I finally opted for Spinal Cord Stimulator implant with Boston Scientific System. I am happy to report my chronic back pain has been reduced by 65%. Eureka! All was well, as I continued my prednisone taper, from 7 mg to 6.5. After a couple of days of reduced dose, (by .5 mg,), I started having my familiar PMR bilateral shoulder and hip pain. At first I thought the problem was my month- old-implant…which had been working beautifully. After 4 days, it occurred to me, that I was experiencing early stage pred withdrawal. Aaarrrggg! I had forgotten about PMR, since my pain otherwise was being so well controlled. So here is my question…has anyone else gone through this scenario, PMR and Neuromodulation implant? I would like to get some feed back regarding this circumstance. Please join the discussion if you can share some insight about how people have proceeded with prednisone taper while using the spinal stimulator.
Prior to this procedure, I used every alternative option, including 4 surgical procedures, acupuncture, chiro, massage, PT, opiates, etc. Nothing was successful, and I am quite happy with the pain relief I have using this implant. Now the goal is to get to the end of PMR, after a diagnosis in Sept, 2013.
Please. Join the discussion if you can. Kind regards, Jerri
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I had knee replacement in 2017 when I was at 6 mgs and about a month or two later I had to up it to 7. I might have gone up to 15 and quickly/gradually went down to 1 mg above 6 to ensure that PMR didn't again appear. An operation can trigger PMR. I am expecting the same for my hip replacement surgery being done tomorrow. I was at 3 mgs last year when my bad hip caused PMR pain to show up on my good hip. I went up to 5, and just recently reached 3 mgs again. Make sure you go high enough to catch it. I might add that I have been on pred since 2016.
Oh I hope so…I’m getting mighty tired of all this stuff!!! Pain…, cures,…not cures…, hope, ….disappointment…and to top all, I’m gonna be 76 real soon!There ain’t no sure cures…damm! Thanks for the positive thoughts. j
Have to remind you that there may not be an end to the PMR yet, even after nearly 9 years ... And that any stressful experience can prod the PMR into life so maybe wait a bit longer before trying a reduction?
After the last 6 months - I know exactly waht you mean though - been the worst since PMR began, and that is quite some time!
Just wanted to ask how the spine pain is and if you are still having good results with your stimulator.I am considering it myself , so I'd be really interested in what information you have before I start the mentally painful task of jumping the hoops to get it on the NHS.
Does it just help your back or your neck and any head pain as well?
Does it help hip pain , not necessarily PMR pain , at all?
Has it helped make it easier for you to be more active?
Perhaps you could write a follow up post rather than just replying to me as I'm sure it would be really appreciated by others whom might be considering it who may have other pain issues as well as PMR.
Update to Spinal Cord Stimulator implant for c(tonic pain…
hi, my experience with the spinal cord stimulator has been a mixed bag. At this point , near 9 months in…I will give the process a 45% success.
My chronic pain is like a fussy child…needs frequent attention, in the form of adjusting my stimulator activity, taking a lay down for an hour, daily, ice pack, and pain pills. I have resumed my fitness activities, needing to improve muscle tone and stamina. Taking it gently so as not to stir up PMR flare , but feeling pretty good about my efforts.
As for the whole SCS process, trial through permanent implant…the decision to undertake the intervention needs to be after serious research into the pros and cons. For me, the cons were unexpected post surgery pain from swelling and scar tissue development…, lasting for 3-6 weeks. Little pain relief for osteoarthritis pain, which was part of my chronic pain. Fiddly adjustments with rep, to get schedules which really provide relief to the problem nerve areas. Disappointment at fact that trial relief was far superior to permanent implant (who knows why)! And one big item…the implant does not fix or cure the cause of pain. PERIOD. If you turn the unit off, the pain is still there, and perhaps more than in beginning, because the pathology which exists has continued to progress.
Positives, …..I do have pain free times and am able to resume some activities I had given up. I know what’s wrong and can adjust my stimulator to give therapeutic relief when I need it.
All in all, I would probably do it again, but with better information up front, my disappointment would be mitigated by more realistic expectations ?
It is nice to have the relief I get…some better than none…but I want it all…so looking forward to next improvements in the procedure and equipment.
Thanks for the update .Just trying to establish as much patient experience as I can to see if it's worth pushing to trial this for me , and another friend whom it could help because if spinal pain.
For once , there is a centre in Wales to get this , although I will have to travel to the other end of the Country to have a referral, a good 5 hour drive each way , rather than travelling for an hour to get it done as that would be cross border !
So I need to feel there is at least a chance for improving the pain by 25% or more to at least some parts of the body that don't respond to medication before I take on the mammoth task if trying it.
Regional NHS funding and guidelines stink when it comes to patient care as I know from bitter experience.
Just wondering , did you also try TENS machines before the SCS and find some relief?
I wonder whether this could be an indicator of how successful a more permanent electrotherapy device would be .
I didn't get any help from TENS for my back pain , and in some joints it seemed to send my fibro pain into overdrive no matter what rate of Hertz used.
I have found some relief in using the portable stimulation of the Vagus Nerve in improving my Migraine , neck and upper back pain though .
One more question , sorry , did you have any Nerve Conduction tests done prior to the test system being used?
Have you got the system with the long term rechargeable battery or will you need the replacement surgery to change each every 5 years?
I know that can apparently make a difference .
It would for me as with EDS , I have to be careful with the amount of surgeries I have because of poor wound healing.
I did have a nerve conduction study, order by g.p. hideously painful and absolutely unnecessary, as pain docs never referenced it.
With my unit, Pain reduced by solid 35-50 percent!! Huge improvement, not perfect…but I’ll take it.
My device is by Boston scientific, I only need to charge every 10 days, takes about 90 minutes. I Do it while cooking, cleaning up, taking a nap, having a glass of wine, watching t.v. This is NOT a big deal! I have not read about needing to replace the implant. So time will answer that question.
As I sit here now, I am pain free, my device is gently vibrating, I forget about it for most part.
I drive, I do not worry about my controller, I usually have it nearby, in case I want to change my therapy from “no feel” to “ feel”. It’s nice to be able to confirm my treatment . (by feeling the buzz,)
This device is compatible with MRI, simply turn it off during procedure. All explained thoroughly, not a problem.
I would do this again. There is a learning curve, and a period of time required for physical healing to take place. I think my body took about 4-6 weeks for all the swelling to subside , another 4-6 weeks for most scarring to take place. This is where electrode wires are scarred in place.
It is important to know where you will be able to meet with your device representative . I have had 5 meetings, and another next week. At these meetings, the rep adjusts and individualizes your schedule options,…I have 9 options. The options are tailored for different areas of my back and legs, different times of activity, and help manage daily living.
i have restless leg syndrome, the device relieves that pain. It also has eased much of PMR pains. I have reduced pred to 6 mg.
Another bit of info, I am discovering that roll- on topical pain relief, menthol, eucalyptus mixtures, are a very effective added remedy.
I use a drug called rizatriptan for migraines. Stops migraine on the spot!
Please ask if you have more questions, and good luck. Jerri
That's brilliant thank you , exactly what I needed to know but couldn't look up elsewhere.Unfortunately, I don't tolerate Triptans it's a genetic thing , they do nothing except for increasing my Tachycardia and stopping my sleep altogether, so I suppose I should say they do nothing good!
I have Indometacin for my Activity Onset Migraine, my cardiac medication has helped reduce the severity of the other migraines but not how often. I'm on a cluster at the moment so the Vagus stimulation is a bit of help but three and a half weeks and counting us feeling a bit much.
Definitely going to try for the SCS and I'm keeping my fingers crossed for some improvement.
you are most welcome🤓. I’m so sorry about your migraines, I struggled with them my whole life till menopause, and the discovery of rizotriptan. I feel like I got my life back, then 10 years later…comes PMR ! Guess my life story can be identified by one word…PAIN. Oh well, nothing new.😁
Sorry for the delay In was away on holiday and the WiFi was awful.I've looked it up and given info to others since but I haven't needed to get one myself yet.I actually improved when my medications were adapted to my needs for my heart and migraine issues.
I also got diagnosed with Vitamin B12 and Folate Deficiencies and Pancreatic Enzyme Insufficiency.
Once I started B12 injections. Folate and Iron infusions and was put on prescribed enzyme treatment I began to improve my nutrient levels which helped my Migraines and general joint and muscle pain incredibly.
The vagal stimulator I have prescribed by the Migraine Clinic , called Gammacore, also had a knock on effect of reducing some of the lower back pain .
Finally, the oxygen therapy I get for my Cluster Headaches also helped reduce body tension and pain in general as well as improving circulation to my muscle tissue making it easier to cope with moderate exercise and build up my activity.
Being able to exercise and improve my muscle strength helped with my back and joint pain in general as well as reducing the Fibro symptoms and the amount of injuries I get from my Ehlers Danlos Syndrome.
Learning to listen to my body and using CBT Mindfulness techniques to note when I was adding more tension to my back and adjusting my posture when I was crunching up made a big difference too. I also have a lower back support when I need it and compression which helps release those lower discs and improve the pain and movement.
I'm steroids free now but I do have low doses of Pregabablin, Paracetamol and Duloxetine each day in combination to control the neurological side of my pain and Fibro.
I still have Indomethacin to reduce any increase in inflammation and rebound migraine and back pain during exercise and to improve my exercise tolerance.
I have Naproxen and/or paracetamol to take if required either prior to more strenuous activity or just after it to combat inflammatory rebound pain and DOMs.
The prevention pain management medication plus pacing myself seems to be helping.
I still have daily pain , I will never be pain free but I'm mainly successfully pain managed now , success being 85% pain reduction whilst doing moderate activity.
Purple Cow gave a lot of good advice here, I'd probably still consider SCS in the future if I need it.
I think trying to get a medical grade vagal stimulator or medical grade TENS machine which have a stronger more efficient pulse rate than most ones that you can just afford to buy and try may be worth looking into first. If you don't get any relief at all from the prescribed devices then it's worth considering trialling the SCS .
You can ask your GP or your back specialist about getting a stimulator on the NHS to trial if most drugs have failed , in England anyway. You can also ask for a referral to an SCS clinic from the GP across the UK , most regions have at least a couple of SCS NHS clinics these days . Discussing the option properly with the Consultant and being assessed is probably the best way to get the information to help with your individual circumstances and decision.
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