@lorirenee1 You are my reference point with regard to a DRG stimulator.. I spoke in January to a doctor at OHSU about a pain pump implant, and was told that their protocol is to first have a DRG trial. I had an appointment for tomorrow with a local surgeon to discuss it, but the appointment was cancelled. I'll go ahead with the trial, though the neurosurgeon who did my back surgery in September said that the DRG is contraindicated.
There was a frustrating 2 week delay in getting my morphine prescription filled this month, so I had to take half of what I was supposed to. Pain went up from 4-7 to 7-10. I chose to keep taking it once a day, not taking the second one, so that I can tell if the adjustment Kevin makes tomorrow on my scs has any effect on my pain. If not, I'll go back to 30mg bid.
My doctor talks about building a tolerance to opioids, but for me, it's not building a tolerance, rather it's that my sfpn is getting worse, which means that the pain is increasing. I get that tolerance can be an issue, but so can increased pain. I don't know how I sleep so well when my feet and ankles hurt so much - and the pain has been moving up to my calves the past few weeks. I'm also noticing that I have less strength in my hands. I was using a clamp today, and I had to use both hands to squeeze it open. There are several things that are being impacted by the autonomic neuropathy.
@martyk I guess we're both at the same crossroad. I'll be following your experience with the DRG trial. I hope it works for you. Are you optimistic? Is the implant to treat neuropathy pain? Mine, as I mentioned, is in my feet and ankles.
I didn't start writing this until it was time to go to sleep, and now I really must stop rambling. Have a good weekend, everyone.
Hi , Steve here, I have been suffering with terrible lower leg pain since my TKR in 2018, it looks like I am headed to a DRG. I tried Stemwave PNS with no good results. It seems I only read about people who don’t like the DRG, is it because it doesn’t work or successfully stories aren’t talked about. I would love to hear from people who are glad they did the implant. I know about the trial 1st but to many times it seems the problems start after the battery is implanted. Any thoughts thanks Steve
Hi , Steve here, I have been suffering with terrible lower leg pain since my TKR in 2018, it looks like I am headed to a DRG. I tried Stemwave PNS with no good results. It seems I only read about people who don’t like the DRG, is it because it doesn’t work or successfully stories aren’t talked about. I would love to hear from people who are glad they did the implant. I know about the trial 1st but to many times it seems the problems start after the battery is implanted. Any thoughts thanks Steve
@martyk I had an ABBOTT Proclaim DRG put in me last July. I had it in me for 5 months, and it did nothing good at all. If anything, it made me worse. After about 4 months of constant adjustments to it. I started to feel the electricity from it throughout my lower torso. It was very uncomfortable, and became painful. At month 5, I shut the machine off entirely, and then, severe burning in my lower torso started. I literally felt like I was set on fire, from the inside out. This went on for about a month, and in that time, I could barely sleep. Within that time period, I also discovered Benfotiamine, a fat soluble form of Vitamin B1, which is thiamine. Within about 48 hours of taking it, all nerve pain in my feet ended, and has not returned. No burning, no throbbing. no jabbing, nothing. I must have been severely Vitamin B1 deficient, because it can cause serious neuropathy when it is low. All in all, my DRG stimulator was a very negative experience. LoriRenee1
Thank you LoriRenee. I'll give the B1 a chance. My problem is that I had 2 surgeries on the toes of my right foot, one in 2016 and the other in 2018. I've tried just about everything under the sun, with no relief for the burning pain.
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@lorirenee1 I did buy some and take it daily I just take according to suggested amount. You have suffered for so long so glad your better now
@lorirenee1 You are my reference point with regard to a DRG stimulator.. I spoke in January to a doctor at OHSU about a pain pump implant, and was told that their protocol is to first have a DRG trial. I had an appointment for tomorrow with a local surgeon to discuss it, but the appointment was cancelled. I'll go ahead with the trial, though the neurosurgeon who did my back surgery in September said that the DRG is contraindicated.
There was a frustrating 2 week delay in getting my morphine prescription filled this month, so I had to take half of what I was supposed to. Pain went up from 4-7 to 7-10. I chose to keep taking it once a day, not taking the second one, so that I can tell if the adjustment Kevin makes tomorrow on my scs has any effect on my pain. If not, I'll go back to 30mg bid.
My doctor talks about building a tolerance to opioids, but for me, it's not building a tolerance, rather it's that my sfpn is getting worse, which means that the pain is increasing. I get that tolerance can be an issue, but so can increased pain. I don't know how I sleep so well when my feet and ankles hurt so much - and the pain has been moving up to my calves the past few weeks. I'm also noticing that I have less strength in my hands. I was using a clamp today, and I had to use both hands to squeeze it open. There are several things that are being impacted by the autonomic neuropathy.
@martyk I guess we're both at the same crossroad. I'll be following your experience with the DRG trial. I hope it works for you. Are you optimistic? Is the implant to treat neuropathy pain? Mine, as I mentioned, is in my feet and ankles.
I didn't start writing this until it was time to go to sleep, and now I really must stop rambling. Have a good weekend, everyone.
Jim
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1 ReactionHi , Steve here, I have been suffering with terrible lower leg pain since my TKR in 2018, it looks like I am headed to a DRG. I tried Stemwave PNS with no good results. It seems I only read about people who don’t like the DRG, is it because it doesn’t work or successfully stories aren’t talked about. I would love to hear from people who are glad they did the implant. I know about the trial 1st but to many times it seems the problems start after the battery is implanted. Any thoughts thanks Steve
@sprinrosa64 I am wondering if @martyk has any updates on the appointment scheduled for April for the DRG?
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1 ReactionUnfortunately, I had to end the trial after only a few days. I may try again the the near future.
Thank you LoriRenee. I'll give the B1 a chance. My problem is that I had 2 surgeries on the toes of my right foot, one in 2016 and the other in 2018. I've tried just about everything under the sun, with no relief for the burning pain.