Neurostimulator for Pudendal neuralgia

[Kelly16]

Hi, I am looking for anyone that has had a Neurostimulator inserted for pudendal neuralgia.

Thanks Kelly

[Cherodgers]

Hello Kelly, I've had the trial period for the neurostimulator for Pudendal Neuralgia. It was external for three days.

[Mascaro]

Please anyone that has had one placed for this let us know. I am considering one as well. Did the pain level go down? I just want my life back. Was it painful?

[Rocky68]

Kelly16. I am scheduled for permanent implant of the Proclaim Dorsal Root Ganglion Stimulator on January 5. The Trial was performed December 1 going in at the S1 and S3. I was asleep during the insertion of the four leads but was awakened afterwards when Stimulator was activated to ensure it was operational.

I have rectal perineum spasms going down thighs as well as lower back pain. I experienced no back pain and intensity of spasms was lowered during six day trial. Please click on my name to direct you to site detailing process. It has been a long trip to get to this point. Not many Drs are certified for the DRG Stimulator. Please contact me with any questions. I will post after I have permanent implant. Rocky68

[Shelall in reply to Rocky68]

Wishing you the best on your implant. I will be following your progress. I had the DRG trial @L1 and S2. As I mentioned before they offered to do the permanent implant at S3, but my pelvic pain specialist said that unless I had another DRG trial at S3 she would not recommend a surgical implant. She has had some success with the Medtronic Interstim at S3 and S4. So I went through another trial. I ended up with an implant with the lead at S3. I am 4 weeks post op and doing well. I am at least 50% improved. I have no regrets going through both the DRG trial and Interstim implant. I do think more anecdotal trials of the DRG will fine tune the application and location of leads for those of us with PN and levator ani syndrome. Hopefully by the time I need a battery change new devices and technology will be fine tuned. Please keep me posted.

[Rocky68 in reply to Shelall]

Your 50% improvement is great. I am trying to avoid crowds this week as both my sister and granddaughter have had a nasty virus with lots of coughing and sore throats. I'll keep you updated once implant is completed and I'm back on my feet. Rocky68

[Mascaro in reply to Shelall]

Can you please tell me your progress

[Mascaro in reply to Rocky68]

I hope it works!!! This will be my last step. Please let me know.

[Rocky68 in reply to Mascaro]

Yes. I will put post out after implant is completed. Rocky68

[Mascaro in reply to Rocky68]

I will say a prayer. God is with you. You will kick assssss!!!!!

[Pijnkliniek]

Please keep the information re neuromodulation coming. Am very interested and on the list to have one placed (one day....).

[Rocky68 in reply to Pijnkliniek]

I will post results once I'm up and about. Rocky68

[Pafen in reply to Rocky68]

Rocky68 how did you go?

[Rocky68 in reply to Pafen]

Paden, we were five minutes from hospital when Dr called. He has a virus (which has been making its rounds around NC) and surgery will have to be rescheduled. I can't tell you how disappointed I was. Came back home and went back to bed. I'll do post as soon as Surgery is rescheduled Rocky68

[Desperateforrelief]

I have a pudendal interstim. It was placed on my pudendal nerve area. I've had about 75% decrease in pain.

[Mascaro in reply to Desperateforrelief]

So you recommend it. That sounds like great news.

[electricjaws in reply to Desperateforrelief]

Did you have it done on the NHS or privately?, if so where did you get it done and by whom , was it in the u.k?

Glad it is helping you, so far!

[Kelly16]

Thanks everyone, great to hear it provides some relief. Where did you go to get them, I am based in Ireland, no specislists here unfortunately.

[Brandi16]

Hi I had one put in 9 months ago. It’s a spinal cord Stimulator placed in the sacrum. The trial placement was very painful for me. I had to rest most of the time but by day 4 I was up and walking. I walked with my dog down to the beach and through the village and felt great.

When they put the permanent one in I only got maybe a 10-15% reduction in pain. I’m thinking of removing it. You also have to consider having a battery inside of you wires made with copper. Read all and everything about it.

I also want to say that previously I have had bilateral decompression surgery that was a complete failure. My pain with meds daily never gets below an 8 I average a level of 10-12 in bed for 5+ years. I hope this helps!

[Barbara9 in reply to Brandi16]

Brandi,where did you have your decompression surgery?im scared as success rates so low and of having ligaments cut.i had trial of interstim and buzzing stirred up vaginal pain.i don't know where to go now..

[hill-top]

Me too. Has anyone had procedure done in UK?

[hill-top in reply to hill-top]

What I man is that i too am thinking of going down this route as last resort and was responding to Kelly's initial post. Not having posted I have made a bit of a mess of posting and doubled up so am replying to myself!. Are there any recommended hospitals on this?

Mine is rectal/anal pain, chronic and debilitating, more so when mobile than sitting so doesn't quite fit standard PN. (Because of pain hate the walking I used to love - long hikes, tennis , heavy gardening not a chance now). And horrendous for rest of day post BM...have turned timing round to eve where poss. Now going into 6th year and have tried everything. Injections at outset had no effect nor a botox injection. Pain management route not of much help.Horrible meds but don't know if having any effect and loathe using them. Use meditation techniques, have gone through MBSR course, etc etc but still pain breaks through.

Hill-top

[Barbara9 in reply to hill-top]

My pain is mostly rectal,fire inside me most of the time.my pregabaline only helps my vaginal pain.im not sure what to do next ,I've been offered PNn surgery,tried interstim 2 years ago,maybe newer sns are better?

[hill-top]

Me too. Hs anyone had this done in UK?

[SuzyQ in reply to hill-top]

I have hill-top; I had a sacral neurostimulator op in June 2015. I will contact you again soon if that’s okay. I am actually in too much pain to sit & write now...

That may give you some indication as to how I feel.

Write again soon. Sue x

[hill-top in reply to SuzyQ]

Oh poor you, Suzy. Sounds like you have had an awful time pre, to have had it done at all, and post having had it done 18 months ago and still in agony. I do so feel for you. Warm hugs and good wishes and look forward to your next contact when you feel up to it. Hill-topx