Hi Everyone,
I have been following this site for about 5 years but haven't posted anything until now. I have had pudendal neuralgia since a vaginal hysterectomy, rectocele repair and TVT insert in 2009. Fast forward to now: I am planning to have a pudendal stim implant in Michigan in June.
I have had numerous injections,bladder and pudendal, trigger point injections with internal/external PT, TVT sling removal, pudendal decompression surgery ( Dr. H) many drug trials , radiofrequency treatments, SC stimulator trial (prior to decompression surgery),
AND needless to say, my life has been ruined since the original pelvic surgery. Of the numerous MDs I have seen, not one has given me a definite answer of what has caused this devastating chronic pain issue.I have left sided vaginal pain, rectal pain and pain where the sling was pulled through (mons pubis), and urinary urge and frequency- some incontinence.
Irregardless, it is obviously here to stay, so it seems. I was wondering if anyone can tell me about their results with the pudendal stimulator implant. The spinal cord stim worked fairly well but I did not have it implanted because I wanted to "fix the problem" with decompression surgery first. I had the surgery about 1 1/2 years ago and it has not helped.
Any ideas before I go to Michigan? Also, if you need any information about any treatments I have had for PN, I would be glad to help.
Desperate.
Cyndi
pudendal stimulator surgery
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cubsfann@comcast.net
- Posts: 8
- Joined: Tue Sep 04, 2012 5:05 pm
pudendal stimulator surgery
Pud. Neuralgia 2009 after vaginal hyster., rectocele rpr, tvt insert. Bladder instillations, pessary insert, mult. med trials, Total TVT removal-Miklos MD, pud. decompression surgery-Hibner MD, radiofrequency trmt x2-Joshi, aggressive internal PT x 9 mos- Kotarinos, PT, mult. trigger pt. injections, pudendal blocks; via CT and intravaginal, sacral stim trial, ketamine infusion April 2014 . pud. neuromodulation trial, 6/14 by Dr. Peters.
7/ 2014, permanent neurostimulator implant; Dr. Peters
7/ 2014, permanent neurostimulator implant; Dr. Peters
Re: pudendal stimulator surgery
Hi Cyndi,
Sounds like you have been through a lot already. I'm sorry you haven't found anything that has worked for you. Gwen recently posted her story about having a neurostimulator implanted in MI. You can read it here: http://www.pudendalhope.info/forum/view ... =74&t=5739
I don't have any experience in that area myself so I can't really comment.
You may also want to read through Lottanerve's posts about how a pain pump helped her. Just another option to keep in the back of your head.
I would be interested to hear your thoughts on radiofrequency treatments -- Did you have pulsed radiofrequency abaltion? Where did you have it done? (Name of doctor),What part of the nerve was treated? Did it help at all or make you worse? Sorry -- too many questions, maybe.
I sure hope that the neurostimulator will be successful for you.
Best,
Violet
Sounds like you have been through a lot already. I'm sorry you haven't found anything that has worked for you. Gwen recently posted her story about having a neurostimulator implanted in MI. You can read it here: http://www.pudendalhope.info/forum/view ... =74&t=5739
I don't have any experience in that area myself so I can't really comment.
You may also want to read through Lottanerve's posts about how a pain pump helped her. Just another option to keep in the back of your head.
I would be interested to hear your thoughts on radiofrequency treatments -- Did you have pulsed radiofrequency abaltion? Where did you have it done? (Name of doctor),What part of the nerve was treated? Did it help at all or make you worse? Sorry -- too many questions, maybe.
I sure hope that the neurostimulator will be successful for you.
Best,
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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cubsfann@comcast.net
- Posts: 8
- Joined: Tue Sep 04, 2012 5:05 pm
Re: pudendal stimulator surgery
I had the radiofrequency procedure twice- targeting the Alcock's canal. It did not help, however, the MD (pain specialist) was awesome and totally understands pudendal neuralgia. In fact, we are trying Ketamine outpt before my stimulator surgery. The radiofrequency has helped others but like pudendal blocks, the trick is getting to the area. I chose not to get any more. The MD is Dr. Jay Joshi MD, DABA,DABAPM, FABAPM at the National Pain Centers (he is the director) www.nationalpain.com. P:847 701-3250. He is in the Chicago area/ suburbs. I would say it's worth trying- may work for you.
Cyndi
Cyndi
Pud. Neuralgia 2009 after vaginal hyster., rectocele rpr, tvt insert. Bladder instillations, pessary insert, mult. med trials, Total TVT removal-Miklos MD, pud. decompression surgery-Hibner MD, radiofrequency trmt x2-Joshi, aggressive internal PT x 9 mos- Kotarinos, PT, mult. trigger pt. injections, pudendal blocks; via CT and intravaginal, sacral stim trial, ketamine infusion April 2014 . pud. neuromodulation trial, 6/14 by Dr. Peters.
7/ 2014, permanent neurostimulator implant; Dr. Peters
7/ 2014, permanent neurostimulator implant; Dr. Peters
Re: pudendal stimulator surgery
Thanks for the info, Cyndi. Sorry it didn't work for you. 
Violet
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.