Dorsal root ganglion stimulation

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Dorsal root ganglion stimulation

Postby Kit » Wed Nov 01, 2017 5:02 pm

I just ended a 5 day trial of DRG stimulation. It was a wonderful success. I could sit with no pain. Their trial is for just 5 days, because one findouts immediately if it worked. After the insertion of the drg leads to my right side S2 and S3 ganglions, I was able to sit with no pain on the 40 minute ride home. The DRG stimulator is made by St Jude Medical, now Abbott. The surgeon was Dr Jolene Smith in Des Moines, Iowa.

See my full update under case studies.

This is the best pudendal success ever, and could help many of you.
Last edited by Kit on Sat Dec 30, 2017 3:17 pm, edited 1 time in total.
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: Dorsal root ganglion stimulation

Postby April » Fri Nov 03, 2017 7:21 pm

Hi Kit,

That's wonderful!! Thank you for the update. My pain doctor just proposed a stimulator to me as well, so I've been reading a bit about it. One of the options he proposed sounds similar to what you had. It's called the BurstDR simulator, and St. Jude Medical is on the cover of the brochure/packet, so I assume it was made by their company. Is that what yours is called? The other one he gave me info on is called the Nevro HF10 therapy. Did you have multiple stimulator options? If so, how did you decide on the one you selected? Do you think you will be able to reduce your medications (if you were on meds)?

April
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Re: Dorsal root ganglion stimulation

Postby Kit » Sat Dec 30, 2017 3:34 pm

I had the permanent DRG neurostimulator installed on Dec 28, 2017. As with the trial, it was a huge success. I can sit for about any amount of time with no pain during sitting or after. This model of DRG stimulator is the Proclaim DRG. The Patient remote device is actually an iPod with the special program for setting the lead strength level up or down. I can change each lead individually. I had to change both the settings when I got home. The settings were a bit too high. They told me “if you can feel it, it is set too high.”. The control device is embedded under my skin in my right mid back location. The leads from the s2 and s3 drg locations to the controller are also embedded under my skin. So I can not see anything. The patient remote device communicates to the controller via Bluetooth.

If anyone has questions, please reply here, or pm me, or if you want, send an email to kitmcdowall2@gmail.com.
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.
Kit
 
Posts: 22
Joined: Mon Feb 14, 2011 3:19 am

Re: Dorsal root ganglion stimulation

Postby Kit » Sun Dec 31, 2017 7:37 pm

I know it is still very early, but I wanted to give some feedback. I had the permanent drg device implanted on Dec 28. Today is Dec 31. I had no pain at all until yesterday late. I had been sitting a lot yesterday, probably a total of 8 hours or more. Then late in the day I started having some pain. When I woke up this morning there was still a bit of pain. I take methadone first thing when I get up. 30 minutes later the pain was gone. For the remainder of today, I will not sit as much. And it appears that I will not be able to reduce my pain meds, at least not much. It is a balancing thing, between the amount of sitting, the drg device, and the pain meds.

Overall, I am super excited that I can sit. It is just a miracle to me.
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.
Kit
 
Posts: 22
Joined: Mon Feb 14, 2011 3:19 am

Re: Dorsal root ganglion stimulation

Postby Violet M » Tue Jan 02, 2018 12:14 am

Hi Kit,

Just wondering which physician implanted your device. Glad to hear you are getting some relief!

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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