Health Organization for Pudendal Education

I had a permanent DRG neurostimulator implanted Dec. 28. There have not been as many views as I thought there would be, so I decided to post an uppate with current status.
1. By far the most important thing to me is quality of life. I have had 95% gain of quality of life. BUT,...here are the specifics.
2. I have to use a 2 in foam cushion to sit comfortably. I just rode to Colorado and back from Iowa, 11 hours each way, sitting up. No pain.
3. I still hAve to take methadone, 10mg, 4 pills 3 times daily. I just started to reduce the methadone 2 days ago. I will take this reduction very slowly. First indication is that even a 1 pill reduction causes a little pain. I have no idea whether I can reduce any methadone,or maybe with time, I can reduce it a lot. Update 3/10/18, the first pill loss caused no problems after 2 days. I will reduce a second pill in 1 week.

If you want to see items about DRG, search the entire forum for DRG. I put a video of my surgery on a post in the NEUROSTIMULATION topic.

I will update this post over time.

I called Dr Marc Conway and am scheduled to see him in May. I wish it were sooner. Because I have not seen him in ten years I need to be sure all the pressure I feel is nerve damage as opposed to something that can be fixed. I am currently caught in a trap of anxiety and depression as my husband of 53 years died in August. I live alone and without my husband it is hard to distract myself from the pne. I spoke briefly with Dr. Conway yesterday and he said he has had so many patients
coming to him wanting to try the drg unit. It is people like you Kit that gives others a glimmer of hope. Please continue to keep posting. I am curious to know what residual pain you feel having the drg unit.

Grammy I am not sure what residual pain is. I do have pain but it is not noticeable on a normal day. A normal day now means that I have no pain anywhere anytime. But there still is pain under the covers. If I do too much that hurts the pudendal nerve, even a little, I can have pain. For example if I put on blue jeans they move my penis too much and I have a high pain levels, level nine. Before the DRG it would’ve taken one to three weeks to recover from that pain. With the DRG it takes about 20 minutes. A huge difference. There are other things that can make me have pain with the DRG. For example raking leaves too much or lifting too much. Anything that involves movement of my pudendal nerve seems to cause pain. Walking does not cause pain. Most things do not cause pain. But those things that do cause pain need to be watch for intently, to prevent pain. Another thing that you need to know is that in addition to the DRG I still have to take the pain medicine, the methadone, to keep from having too much pain. In addition I have found accidentally that I have to sit on a 2 inch cushion. With the cushion, I can sit anywhere anytime for as long as I want.

I have been so lucky. For example my surgeon was scheduled to implant a different type of stimulator about two days before my surgery. My surgeon went to a class on drg that previous weekend. Fortunately when my surgeon returned from the class on DRG she called me on a Sunday night and said that we need to change types of neurostimulator‘s. She said we should use a DRG which I didn’t know what it was. That was so much luck on the timing. Another place where I was lucky was that after the DRG was implanted, I could sit pretty good most places but I did have a little pain. I tried a few things and found an old cushion that I had had for several years and tried it. It worked perfectly. That I could find a perfect cushion that let me sit anywhere any place any time for as long as I wanted was soooo lucky.

If you do get a DRG implanted please try to do everything you can to assist the DRG. Think of everything that you can that may help. Keep your mind very open. Help the clinician as much as you can. Try experimenting with the strength of the signal switch your handheld device at your home. Hopefully your luck will be as good as mine was. I wish that everyone on the pudendal forum could you try a DRG if The doctors think that it would help them. Good luck to everyone. And please feel free to contact me anytime via this forum or email or phone. Anyway that I can help, I will be so glad to help anyone that I can.

Thats all for now. I will get this updated.

Hi Kit,
It is so good to hear that you are doing so well. I sent you an email this morning with some questions regarding DRG. I have been through DRG trial and have an Interstim.

Thanks for posting. The video was great to see.

My user name is Allshel

Hello Allshel,

How did the DRG trial go for you? Wishing you success with this treatment.

Violet