Sorry it's been a while since I provided update re DRG Stimulator implant. I believe last post was after Rep adjusted my lead strengths on February 5. When I left hospital highest lead strength was 19. On Feb 5 my Rep had me stand to adjust strengths. When I left she had highest setting at 52. One lead was increased 7 fold.
Within five days I experienced pelvic pain which I never had before as well as back pain, burning thighs and tightening in lower bottom half. In other words I felt like I was being ripped apart. When I called Rep I was told to lower highest number a couple points - no explanation.
Returned to Dr 2/27 and told him. He agreed leads were set too high. Explained to Rep my leads needed adjusting while I was laying on table as that is when I experienced most problems. When I left highest setting was 18. Rep said it would take a week for nervous system to settle down as it had been overstimulated. I have caught several mistakes made by Rep so you really have to be your own advocate.
I am overall 50% better. It did take about six weeks to recover from procedure. I no longer have severe spasms from rectum to vagina. I continue having low back pain and tightening and burning in bottom of buttocks. I have stopped Lyrica but continue with one baclofen and two Tramadol 50.
Hope to meet with Rep this week. I am happy I had it implanted and hope for more relief soon. Rocky68
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Good to have update but what a tale. Do hope it continues to work for you and you get even more relief with things calmed down. Have you suffered from meds reduction? Keep us all posted as things progress. You are doing us all a great service with your imparting of informative personal experience. Thank you hugely Rocky!
No withdrawal from Lyrica but I took only 2 75 mg tablets/day. Dr gave me samples of 50 mg so took couple of weeks coming off them slowly. I had difficulty urinating while on Lyrica. I hope I don't have to go back on them due to burning sensation.
I am privately communicating with another lady who had Axium four lead DRG Stimulator implanted and one who went with sacral interstim Stimulator. I think we all experienced some form of relief but it has not been an 80 or 90% ipain relief. I will continue to post as things develop. Thank you for your comments. Rocky68
Hi Rocky 68 How are you doing? I hope things are going well. Is your device the Proclaim? I couldn’t remember. I am hanging in, but the Interstim is not as helpful as I had hoped. Pain has decreased, but sitting and exercise cause flares. Mornings are better, but evenings are still tough. I am using medical cannabis CBD tincture and still on 1800 gabapentin. I plan on keeping the device in for at least a year. It only helps pelvic pain on right side. I am having a lot of SI joint pain on left. I am petite, but about 15lbs. overweight. I am going to try and lose some weight to see if it at least helps the SI problems. Let me know how you are doing.
I'm still at 50 per cent relief. I am really disappointed in the Reps for this equipment. They have canceled appointments with me. I finally have increased it three or four points from the last setting hoping that would provide more relief.
I have also asked for them to meet with me and my doctor on the 29th of this month.
I am OK in the mornings as well. The spasms have decreased. Back pain is still really bad especially when I sit so I know it's referred pain. They keep trying to tell me it's arthritis but I know it's not.
It feels like sitting on a rock then the back pain starts immediately upon sitting. . It is more uncomfortable when I lay down there feels like there's so much pressure in the perenium under rectal area
I do know that it has helped because I cut it out for four days and what was absolutely miserable. I am off Lyrica and hope to stay off of it. I still take two tramadols a day and one or two baclofen for muscle relaxation.
I took a three hour trip as a passenger to see my granddaughter graduate college and it took me two days to recover from that trip. I am very petite as well only about 5 foot one but my weight is good. Are Reps meeting with you or are you adjusting the levels on your own? I do know you can over stimulate the muscles and that causes more harm.
I am going to see how I do after May 29 I will do another posting after my body has time to adjust to new settings. I am like you I will probably give it six more months turn it off and see how my body does and if I feel like I'm not getting enough I will have it removed but at this time I do know that it is helping somewhat. The only thing is this is probably our last resort to finding any type of relief.
Thanks for reaching out to me and please stay in touch Rocky 68
The same thing happened with me. The stimulation was too high. My doctor told me that she wanted it set so that I had to concentrate to feel stimulation. I am on 1800 mg gabapentin. CBD tincture 2x daily. ( legal in Ca.) I am Exercising in pool and have PT for SI joint. Biggest problem is still sitting. When I have to sit for two or more hours I have burning afterwards. Exercise still causes some burning afterwards too. I have had to retest all programs on my remote. Hopefully will meet with rep soon to try a couple of different programs. I think dealing with pelvic pain is uncharted territory for these reps. Glad you are having success and hope we can keep tweaking our devices! Take care!! Interstim @ S3 12/17
I had only DRG Trial and implant. I know others on this site have had the interstim. If you do search on interstim that should pull it up for you. Rocky68
Rocky thank you for the information. Was your original problem Pudendal Neuralgia? It scares me that now you have other issues. You said it was worth it. You also said it has taken you 6 weeks to get better. Can you exercise? You have not gotten to an 80 percent pain relief. I pray you do. I ask you all these things because my doctor is dying to do this on me and I am really scared.
Hi Mascaro. The pelvic pain which was new to me was the result of Rep setting Leads too high. When nerves are overstimulated more problems can result.
When I had leads reset i laid on table for reset. Highest lead strength may have been 18 with reset. Within three days the pelvic pain had stopped
However, I continued having low back pain, tightening and burning in back of thighs and low buttocks. I had these problems before implant. The implant did remove the major spasms between rectum and vagina.
After several calls to new Rep she asked me to cut off therapy to see if I still had back pain. Once implant was off back pain was much worse. This was last Thursday. I have left therapy off and will meet with Rep Tuesday morning for reset.
I can't emphasize enough that you really have to be your own advocate as far as Reps. I've left VMs, texts and called repeatedly asking for their help. Since this has been approved in States for only a couple of years I think they are learning as they go.
My new Rep expressed my concerns to other Physicians who had done implants on PN patients. They said it can take as much as six months to get to most beneficial settings.
They diagnosed my PN by basically ruling out everything else. I am glad I had implant and am hopeful I get more relief. They have recently done implant for patient with clitoral pain so I'm trying to ascertain how much relief she experienced.
I did have to undergo psychological testing (insurance requirement) prior to implant.
In couple weeks I will post again how I'm doing. I'll be happy to answer any questions. Please note that I never had any vaginal PN problems. My problem was rectal pressure, spasms, burning and tightening in buttock. Rocky68
Thank you for getting back to me. I hope you get better. Actually you will. Your next post will be great. When you give out information it helps everyone going thru this. Have RFA done shortly. Praying this will be the last one. We all have hope.
Hi Rocky 68 How are you doing? I am almost 9 month’s post op from right side S3 Interstim implant for pudendal nerve/ low back/ rectal and coccyx pain. Yes the Interstim has helped, but sitting is still a challenge. My bad news is that I am have left low back, sciatica and SI joint pain that is also adding to sitting pain. I am still on gabapentin and a high CBD tincture.
Hi Shelall. I have been post op for DRG Implant for nine months now. It has really helped with rectal pressure and spasms. I still cannot sit comfortably for long periods of time and sitting does continue to cause sacrum/low back pain. I wonder if you've found anything to help with back pain. Rocky68
Hi Rocky,I have had similar results, but still have sitting pain in tailbone, sometimes rectal and sitz bones along with left side sciatica and SI joint.
Some low back and pelvis is still a problem for me. I went back to PT and she said all muscles in those areas are like clay. I am doing acupuncture, chiropractic care and massage just to keep me going. I am still using a high cbd tincture. My back surgery was at L5 S1. My trial DRG leads were at L1 S2 and at that time it was just for tailbone and rectal pain. Interstim is at S3. I am hoping that in the next year or so that DRG gets refined enough to try it again. BTW my PT explained that the constant state of myofacial issues involving nerves and muscles creates a pull like having braces on your teeth. The tug and pull can create issues in low back and SI joints. That is why it is not unusual for people like us to experience pain in these areas.
Thanks Shelall. I I am still satisfied with my having the DRG implant but I do wish I had gotten the 80 or 90% improvement I was hoping for. I think part of the problem is the St Jude reps set the levels too high and overstimulate my nervous system. I am in process of lowering them and it has helped.
I return to the pain management doctor tomorrow and I imagine he's going to want me to try Lyrica again. I have read some people have gotten good results with the combination of Lyrica and Cymbalta. Tramadol 50 really does not help with the back pain so I may just try to get a stronger dose of tramadol. Stay in touch and good luck. Rocky68
Hi Shelall. It's good to hear from you but I'm sorry you've not gotten any additional relief. I had my DRG stimulator reset about four weeks ago. I am still at the 50% mark.
I still have to sit with the pillow and can only sit for a short time and I still have low back pain especially when I try to sit for any period of time. The doctors had told me I had a slightly bulging disc at L5 S1 but they assured me that was not the problem. However upon reading of problems people experience when they have disc problems at that particular joint it certainly fits the problem and symptoms I am having.
I tried gabapentin but found Lyrica helped more. However it was a mood changer for me and I discontinued use.
The last time they set my stimulaltor I was in a sitting position. I could feel the stimulator signal on the left side but my right side I could not distinguish between my nervous system's impulses and the stimulator. I plan in the next couple weeks to cut off my stimulator and see if I can get it re-set one more time just to see if it provides any more relief.
I currently take tramadol 50 and sometimes ibuprofen and a clonazepam to help sleep at night. I did do a search on this website on DRG stimulators and some of the responses indicated some people had gotten as much is 80% relief.
I really hate to cut my stimulator off and go through the horrible spasms I was having before because I have experienced 80% reduction in intensity of spasms
Did they put a lead in at the S1 level for back pain for you? Did any of your MRIs show any disc problems? Please stay in touch and I would do the same Rocky68
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