DRG Stimulator Best Lead Placement? - time sensitive!

Read about the latest Technology, which Doctors are performing this technique and the advantages and disadvantages of this cutting edge pain management therapy.

DRG Stimulator Best Lead Placement? - time sensitive!

Postby Drew_Mac » Sat Oct 21, 2017 8:12 pm

I am a 26 year old male with pudendal neuralgia and experience severe problems with rectal, penile, and perineal pain/function. I had a DRG (dorsal root ganglion) trial stimulator implanted Wednesday Oct. 18th for help with my pudendal neuralgia, which I have had since May 2012. The doctor put the leads on S2 and S3 but not S4 (the three nerve roots the pudendal nerve branches off of). He can only use 2 leads on each side, and my pain is bilateral.

Has anyone ever had a DRG stimulator implanted for pudendal neuralgia? If so, where were the leads placed? I really am looking for help with rectal and penile pain and function. I appreciate any replies, as I will have to make a decision soon on whether or not to have a permanent put in and really wondered at which levels of the spine (S2, S3, and/or S4) people with pudendal neuralgia have had the most success with lead placement.
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Re: DRG Stimulator Best Lead Placement? - time sensitive!

Postby Violet M » Sun Oct 22, 2017 5:50 am

Are you getting any help from the trial, Drew? Sorry, I don't have any experience with this treatment so I can't say for sure but my guess would be that each patient is different and it is a matter of trying which lead placement works best for you. Are they able to change the lead placement if this current placement doesn't help?

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: DRG Stimulator Best Lead Placement? - time sensitive!

Postby Kit » Wed Nov 01, 2017 5:08 pm

I just ended a 5 day trial of drg stimulation for my right side pain (sit bone, tip of penis, anus), and it was a complete success. They placed the leads on s2 and s3. Again, I only had pain on one side.

I hope you have success with your drg. I assume you have tested various settings. I had to change one of mine several times before I got the right level.

See my full info on case updates section.
Kit Male age 73 Sitting pains started 10/2003. Surgery Ansell 4/2004. No help. Penis pains started 12/2004. Surgery Filler 4/2009 to remove scar tissue. No help. Surgery 3 by Hibner Nov 2012. The Hibner surgery also did no good. I can lay on my left side. I can not sit at all, except with pain. I can sleep well with the help of sleeping pill. The pain gets a little worse every year.
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Re: DRG Stimulator Best Lead Placement? - time sensitive!

Postby Kit » Thu Nov 02, 2017 11:27 pm

Drew, one reason why you may want to proceed with the DRG permanentdevice is that the device you get will be newer and hopefully better than the one used in your trial. If your trial was like mine, they used an older model of the control box. The permanent one will either be the Aclaim model or their new Proclaim model. And one would hope that the new device might be better.also, your company rep can try different settings. In addition to up and down settings changes, they have several other option for how they manage the signals.talk to your company rep about those options.

One more reason to get the permanent device is that it is upgradeable. The device under the patients skin can have software uploaded via Bluetooth communications. So in case the device does not fix all your problems, maybe it will in the future.

Good luck. Hope this is your answer.
Kit Male age 73 Sitting pains started 10/2003. Surgery Ansell 4/2004. No help. Penis pains started 12/2004. Surgery Filler 4/2009 to remove scar tissue. No help. Surgery 3 by Hibner Nov 2012. The Hibner surgery also did no good. I can lay on my left side. I can not sit at all, except with pain. I can sleep well with the help of sleeping pill. The pain gets a little worse every year.
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Re: DRG Stimulator Best Lead Placement? - time sensitive!

Postby Allshel » Wed Nov 15, 2017 7:01 pm

I had the St.Jude Axium DRG trial in August for perineal/ rectal spasms and pain with sitting. Leads were at L1 and S2. First three days went well. On third day Rectal pain intensified. Some pain was relieved by 90%, but not the rectal spasm. They offered to implant the lead lower at S3, but my pelvic pain sp. recommended not going ahead unless I had another trial with lead at S3. She suggested trialing the Interstim at levels S3 and S4. If that does not work I will probably have another DRG trial at S3 later in 2018. Did you get relief from trial lead placement? Did your Dr offer permanent placement at S4?
DRG is so new there is not enough anecdotal info for PN.
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Re: DRG Stimulator Best Lead Placement? - time sensitive!

Postby Allshel » Wed Nov 15, 2017 7:11 pm

Kit how is the permanent DRG working out for you?
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Re: DRG Stimulator Best Lead Placement? - time sensitive!

Postby Kit » Wed Nov 22, 2017 4:02 am

My trial was only for 5 days. Then they had to remove the temporary drg stimulator. I will get the permanentdevice on Dec 28.
Kit Male age 73 Sitting pains started 10/2003. Surgery Ansell 4/2004. No help. Penis pains started 12/2004. Surgery Filler 4/2009 to remove scar tissue. No help. Surgery 3 by Hibner Nov 2012. The Hibner surgery also did no good. I can lay on my left side. I can not sit at all, except with pain. I can sleep well with the help of sleeping pill. The pain gets a little worse every year.
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Re: DRG Stimulator Best Lead Placement? - time sensitive!

Postby Violet M » Wed Nov 22, 2017 4:54 am

Too bad you couldn't get it before the holidays, Kit.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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