Neuromodulation therapy

[r5cervelo12]

Has any one tried this? with PN conditions?

[RLH356]

Yes, i did the trial and then the permanent bilateral pudendal implants in March and April of this year. It has reduced my pain and given me back quality of life. I highly recommend Dr Benson. He is a knowledgeable, caring, compassionate doctor. One of two doctors in the states that does this procedure with a good outcome. If you have any questions, I would be happy to try and answer.

Sanford Female Pelvic Medicine and Reconstructive Surgery Clinic

Dr Kevin Benson

1500 W 22nd Street

Suite 402

Sioux Falls, SD 57105

Hours

M–F: 8:00 AM–5:00 PM

Phone

[phone]

Fax

[phone]

[r5cervelo12]

I see does this doctors just men? I don't know if I'm even a candidate. I have pelvic floor muscle issues, form a bicycle crash.. its just hell for me some days.. started PT at the Cleveland clinic. I have appointment with there pain management doc.

[RLH356 in reply to r5cervelo12]

I'm a woman so I'm not sure. However he learned this procedure from the creator, Dr Ken Peters in Michigan. You could call either of them and I think they could give you direction or make an appointment for a consult and evaluation. I can get you Dr Peters info if you like.

[r5cervelo12 in reply to RLH356]

Thanks, yeah if you could. I'm going to talk to Cleveland Clinic as well.

[RLH356]

Comprehensive Urology

31157 Woodward Ave

Royal Oak, MI 48073

[phone] (Office)

AND

Beaumont Hospital Women Urology

3601 W 13 Mile Rd

Royal Oak, MI 48073

[phone] (Office)

I think Dr. Peters is a urologist so I would think he would accept both male and female patients.

[r5cervelo12 in reply to RLH356]

Thanks, if you don't mind could you tell me your symptoms? have you had a injury?

[RLH356]

Dr. Benson me with pudendal neuralgia. I fell off of my bike on to my left hip and buttock; that was in July of 2014 and from that time on it just progressed to severe pelvic pain burning shooting pain in buttocks the backs of my legs the saddle area.

[RLH356]

Whoopsie...Dr Benson diagnosed me with PN. He did so by giving me a pudendal block in the hospital. That gave me complete relief for several hours. Then the following day he did the trial neuromodulation. I went back home and tried it for a month and had pretty good results so decided to go ahead with the permanent implant. I don't know what I would have done without it. I was desperate and in severe pain 8-10 everyday. Sitting was totally impossible without severe pain unless it was on the toilet. I still don't sit very often because that does still irritate that nerve but not to the degree that it did before the implants.

[r5cervelo12]

Wow it was that bad.. how would you rate how much better ?? you got afterwards.

[RLH356]

Between 50 and 75% better. A lot depends on whether I sit or travel in a car. Those are my big triggers.

[Pafen]

I trialled a peripheral stim implant which didn't work. It seemed to surround my pain but didn't actually get right on it. The chances of a peripheral stim working are pretty slim I've heard.

[RLH356]

It depends on what you call success. It is not intended to cure but manage pain. Anything 50% or greatr in reducing pain is considered successful. A person probably would not be considered a candidate if they went into it thinking it was an easy fix. I was discouraged at times during the trial because there is a lot of trial and error until you learn what works for you. Also, this is not the same surgery a lot of doctors do in the states at the sacral level. The leads are placed deep in the pelvic area in close proximity to the pudendal nerve which is why both doctors have high success rates. It's not for everyone and the decision should not be made lightly. For me, it was the right decision and I can't imagine life without it and back on high doses of narcotics just to exist.

[r5cervelo12 in reply to RLH356]

I know its intended to mange the pain. One would be unrealistic, to think other wise. But I'm glad it worked for you..

[StevenM]

I had one implanted in London almost five years ago. As RLH356 rightly says, it is not intended as a cure, it is an aid in managing pain. I have been very pleased with the result. The first trial did not hit the precise spot, so it was repeated and the second time it was done on a retrograde basis and was spot on. It has been highly beneficial for me, but no two people are necessarily alike.

[r5cervelo12 in reply to StevenM]

Wow, I see thanks. I'm going to Cleveland Clinic a pain management doctor there and we will see.

[Richard1969 in reply to r5cervelo12]

I went to the Cleveland Clinic prior to seeing Dr. Kenneth Peters out of Beaumont Hospital in Royal Oak, MI.

Save your time and monies and go straight to Dr. Peters.

[r5cervelo12 in reply to Richard1969]

You couldn't be more right. I had my appointment with them last week, and it was a complete..waste of time and money. I drove almost 9 hours.. for this care I could have got from my PCP.

What this doctors contact and info?

Thanks, Gary

[sierra in reply to StevenM]

Hi SteveM

Did you have bilateral pudendal implants inserted in London or were these sited near the sacral spine?

Where was yours done? Was it at the National hospital for Neurology and Neurosurgery Queens Square in Lindon ?

I wasn't aware that anyone was doing pudendal implants in the UK.

Sierra

[StevenM in reply to sierra]

Hello Sierra,

Right hand side into the pelvic floor, re suspected PN - yes at the NHNN. The NHNN are involved in neuro-modulation for spinal chord damage, incontinence and pelvic pain.

Best,

StevenM

[r5cervelo12 in reply to StevenM]

Hey, Steve I think I need this as well. I had a accident siting down on a bicycle seat. Would you mind sharing your symptoms.

[StevenM]

Hello r5cervelo12....12 years ago I had a third round of surgery for a thrombosed haemorrhoid and unfortunately they damaged a nerve during surgery. I woke up with pain in the pelvic area, exacerbated when sitting or lying down (less when standing), tingling, twisting, burning, aching constantly...flare ups every so often lasting three weeks at a time sometimes. 12 years on I still have all of this, but over four years ago I had a Sacral Nerve Stimulator implanted. It has helped somewhat but I also practise mindfulness on a daily basis and yoga quite regularly too. Good luck in your quest!

[r5cervelo12 in reply to StevenM]

Thanks, good luck to you as well!

[sierra in reply to StevenM]

Thank you Steve for sharing your symptoms.

Do you suffer from bladder pain/ burning and urinary frequency due to bladder pain?

I was turned down stimulator because the team at NHNN thought bladder symptoms not related to pudendal nerve. Although I have read that this nerve damage can cause bladder symptoms.

Does anyone else diagnosed with pudendal neuropathy or entrapment have bladder symptoms?

Regards

Sierra

[StevenM in reply to sierra]

Hi Sierra,

No bladder issues at all.

Regards, StevenM

[Pepper1977]

Yes didn't work for me. Found out I had different nerve issues and had those resected. Some people get better with pn with suppositories and physical therapy. Join the closed Facebook group called pudendal hope neuralgia