DRG (Dorsal root ganglion)

Posted by martyk @martyk, Mar 20 8:12am

Has did anyone tried DRG a neuromodulation, for chronic pain in the feet? If so, did you get any pain relief?

@martyk In order for you to have the best chance in having your question answered, I've tagged members @grandmar @wheelerma @2011panc @bustrbrwn22 @polygons @sunnyflower @magnum52 @jesfactsmon.

Mentor @jimhd has specifically discussed dorsal root ganglion in the past.

In the Spine Health group there has been discussion on dorsal root ganglion and I have linked that discussion. You may wish to scroll through the discussion to find suggestions and members that might be able to help.

Spine Health
– Anyone had Spinal stimulator removed? Replaced? https://connect.mayoclinic.org/discussion/spinal-stimulator/

May I ask long you've had a dorsal root ganglion and what past treatments you've tried?

REPLY

@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

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@lorirenee1

@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

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@lorirenee1 Hi good to hear from you .I'm glad you found a bit that helps .I have the burning pain in my thighs Wonder if this would work for me?

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@lorirenee1

@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

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Hello Lori, thank you for sharing your experience with Abbott DRG. I'm sorry to hear that it didn't work for you. Didn't you try the trial for 5 to 7 days before you had the permanent one implanted? You didn't get 50% relief with the trial How did they explain the burning in the lower torso after you had turned it off? Can you tell me where you had chronic pain before trying DRG? I know I'm asking a lot of questions. I'm considering DRG. My pain is in my toes from 2 prior surgeries on my toes .I just started taking Benfotiamine 180mg today.
I'm happy you finally got relief.

REPLY
@lorirenee1

@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

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Sorry to hear the DRG wasn't effective. But, you got relief with a supplement. Did you have the DRG removed?

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@martyk

Hello Lori, thank you for sharing your experience with Abbott DRG. I'm sorry to hear that it didn't work for you. Didn't you try the trial for 5 to 7 days before you had the permanent one implanted? You didn't get 50% relief with the trial How did they explain the burning in the lower torso after you had turned it off? Can you tell me where you had chronic pain before trying DRG? I know I'm asking a lot of questions. I'm considering DRG. My pain is in my toes from 2 prior surgeries on my toes .I just started taking Benfotiamine 180mg today.
I'm happy you finally got relief.

Jump to this post

@martyk I had the DRG due to extreme pain in the balls of my my feet and toes; constant throbbing, stabbing, burning. My trial lasted for 9 days. Only did days 6-9 seem to bring my pain down by about 50%. The first days of the trial, I had no relief. In retrospect, this was probably not consistent enough to have the DRG surgery, but I did. My pain doctor thought perhaps that my torso burning was that the neuropathy spread. I was devastated, as that much burning was excruciating. I accidentally discovered Benfotiamine, and I would say that with 2 days, I was free of burning and pain for most of the day. When I do have pain, it is mild, and brief. I would imagine I had low thiamine, as the Benfotiamine worked magically for me. I take 600 mg. a day. It has changed my life. LoriRenee1

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@martyk

Sorry to hear the DRG wasn't effective. But, you got relief with a supplement. Did you have the DRG removed?

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@martyk I did not have the DRG removed. I don't bother it, and it doesn't bother me. So long as it is turned off, I am fine. Lori

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@lioness

@lorirenee1 Hi good to hear from you .I'm glad you found a bit that helps .I have the burning pain in my thighs Wonder if this would work for me?

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@lioness I would definitely try the benfotiamine. I buy Best Vite Benfotiamine and take 600 mg. daily. I haven't felt this well in years. Lorirenee1

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@lorirenee1

@martyk I had the DRG due to extreme pain in the balls of my my feet and toes; constant throbbing, stabbing, burning. My trial lasted for 9 days. Only did days 6-9 seem to bring my pain down by about 50%. The first days of the trial, I had no relief. In retrospect, this was probably not consistent enough to have the DRG surgery, but I did. My pain doctor thought perhaps that my torso burning was that the neuropathy spread. I was devastated, as that much burning was excruciating. I accidentally discovered Benfotiamine, and I would say that with 2 days, I was free of burning and pain for most of the day. When I do have pain, it is mild, and brief. I would imagine I had low thiamine, as the Benfotiamine worked magically for me. I take 600 mg. a day. It has changed my life. LoriRenee1

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Thank you LoriRenne. I'm scheduled for the DRG trial on April. I started taking Benfotiamine 7 days ago. But was taking only 100 mg twice a day. I will increase that to your recommended dose of 600mg daily. Marty

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@lorirenee1

@martyk I did not have the DRG removed. I don't bother it, and it doesn't bother me. So long as it is turned off, I am fine. Lori

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Thanks

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@lorirenee1

@lioness I would definitely try the benfotiamine. I buy Best Vite Benfotiamine and take 600 mg. daily. I haven't felt this well in years. Lorirenee1

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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

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@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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