DRG Stimulator Best Lead Placement? - time sensitive!

[Violet M]

Hi Ellie,

I have not heard of this drug before either. I am glad it is working for you but please be careful.

There is a long list of references on the topic at the following article. https://www.webmd.com/vitamins/ai/ingre ... 513/kratom

Violet

[jenningsboi1996]

Hi, my name is Austin. I’m a male, I’m 23 years old, and I was diagnosed with pudendal neuralgia this year after about 10 wrongful diagnoses previously. I recently just finished my third round of pudendal nerve block injections, both sides, finding about 20-30% pain relief at times, so not very successful. Thinking about the DRG stimulator, (groin, testicles, pelvis, and rectal pain for the past 13 years), can someone give me some advice or experiences with the DRG? This disease is ruining my life and I’m really at a loss for what to do. It would be greatly appreciated.

[April]

Welcome to the forum, Austin. Yes, it does feel like this problem takes a lot life out of us. Many people get a pain flare and no long-term benefits from nerve blocks, so your 20-30% reduction in pain sounds pretty good. Several people have posted about drgs, so I think the best way to get info from here on that is to use the search engine. Kit is one, but you're on his thread so you know about him. What other treatments have you tried?

April

[jenningsboi1996]

Quick question for those who had the DRG stimulator... for the 7-10 day trial are you under an anesthetic when they put that one in too? Or just for the permanent implant? Also, how long was the actual procedure for both the trial and the permanent implant? I am scheduled for my trial next week. Please and thank you.

[Ray P.]

How did your trial go jenningsboil1996?

[Truth]

Hi All,

Been reading the board for many years but just joined. After trying just about every kind of Dr and treatment just decided to do the DRG Neurostimulator. I went in yesterday and had the trial leads put in place and recovering today. I had prayed this would finally be the answer. I was taking cymbalta for pain with prescription for very bad days of Duexis. No pain meds this week so I can see if the trial is working, no showers either!

Well, no miracle yet, but I am playing with the settings. They placed leads in L1 and the Sacral nerve. When I turn up the juice I can feel the electricity in lower back for L1 and down my but and leg for the sacral. I don't feel it directly on the perineum, so I still have some pain, been sitting for two days straight though as I have a lot of work to get done, so given that and no pain killer meds it is not killer pain, so maybe is cutting it. So, may be working, I will wait to see this week. I am scheduled to take the trial out and then if we feel it works to put in a permanent on December 27th. I am at my insurance max deductible for the year so trying to get it all in in 2019 to not have a huge co-pay.

So, I thought I would share with the board that has given me some help and hope and see if my experience helps anyone.

From my research on this I felt this could really be a solution and found a Dr in Houston that had done these before for the same issues.

[Truth]

jenningsboil1996

They did knock me out completely for the trial leads. I have read though that some do not. My Dr said he found it to work better if out completely.

[sox]

I had leads for my drg trial inserted last week at L1 and S3. I still have some anterior vaginal and buttock pain. Wondering if adding an S2 lead would help for the permanent implant. I have also had quite a bit of back pain and muscle spasms at the site where the needles were placed. The pain decreases with inactivity, ice and heat, but it hasn't really lessened. II am concerned that if I go forward with the permanent drg stimulator that this back pain will put me in a worse situation than I was before. I am wondering if this is a common complication and whether it resolves. Any advice is appreciated. Thanks!

[Truth]

Update: DRG in since December 28th, 2019 - two month check in

I did the permanent implant (although my Dr said it is reversible) right after Christmas. They put the leads at L1 and S1. I had a hard time pulling the trigger because the idea of an "implant" unsettled me and my trial did not eradicate all pain. I felt like it cut it 40-50%, so needed to decide in a week and before the New Year to save on the deductible to go or not. FInal deciding factors:
1. Is reversible
2. Seemed like 40-50% pain relief and that was enough to add a great deal of value to my life once I got over the sadness of not a miracle cure
3. Dr told me that we will see in 2-3 months and that a longer time period is a better gauge for my pain as it is "Therapy" (I had to take his word on that )

As an update, a few weeks after surgery I was not so sure it was worth it. Surgical pain still, combined with the perineum pain. However, over time I have seen results. Since I have learned to work and function through the pain, I am use to it always being there. But now over two months I notice myself being more active, in better mood, better cognition. What has happened is that over time the pain has slowly improved. Day to day, hard to measure but over 2 months I can see the trend line. I have quit cymbalta and all pain meds now!

I have went in the office and they have adjusted the settings and that helps helps. I now have two programs to choose from and we are still dialing in the best calibration. The Dr. Said give it time as it should improve with time - they said wait two months and see. I am off all pain meds now and still feel some pain every day, but instead of spike at 8 it spikes at 3 or 4 with fewer spikes. That alone enables more exercise, diet, etc. for me which also helps.

I cannot feel the stimulation except sometimes if I move in a funny way. They tell me that you should not feel it. Now you can adjust it with an Ipod, so there are times I do turn it up a bit so I can feel it on purpose to make sure it is doing something.

Also, because the pain is not as bad I am slipping into bad habits like no stretching,no exercise, late hours at the office, sitting for 12 hours straight, bad cushions. That brings the pain back, but the spike levels are lower. I think my issue was brought on by combination of unlucky draw on pelvic anatomy, long hours sitting in office and car and high stress that created a nerve fire that took years to wind up and will take years to unwind.

So, I will need to make sure I continue to manage it holistically. So for me, the DRG stimulator has cut my pain about 50-60% at this point. I would have said 30-40% right after surgery, so time has helped and praying it continues. This type of ongoing pain can make you feel hopeless at times but I decided after much prayer and soul searching I have a family that needs me, a Lord that loves me and that I was going to fight this as best I can. Boards like this in our modern world our an incredible tool for hope and support, especially for rarer issues like this.

Here are the things I have found work for me to attack this pain:
1. DRG Neuromodulation implant
2. Daily pelvic and perineum stretches taught to me by a physical therapist (They showed me dozens but I found the 1 or 2 I can do that work best and can be done anywhere - often for me in the morning shower)
3. "Cushion or Assets" FIRM cushion for office and car (long sit hours) to relieve pressure from perineum
4. Get up and walk at work every 45 minutes (when I can, often can't do this as tuck in meeting but need to more). Physical therapist recommended
5. Varidesk adjustable desk in office so can sit and stand at intervals
6. Standing chair that allows me to stand but sit back and to relieve pressure off the perineum
7. Less stressful job- working on this one

I hope this helps anyone considering this. I ultimately did a lot of research to find the best Dr in my area for this and landed on Dr. Ioannis Skaribas,a pain specialist, and very experienced in DRG implants.

[alitajohnson]

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