Study: PTNS effective for CPPS

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londoner
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Percutaneous Tibial Nerve Neuromodulation

Post by londoner »

Hi everyone. I've long given up on any miracle cures but would be interested to know what you guys think of this possible treatment...

Here's the website: http://www.uroplasty.com/UPC_US.asp

And.. this is a newspaper article from late last year..


1: ZAPPER STOPS PELVIC PAIN
From Daily Mail - 29/11/2005 (169 words)
GH

A NEW device that stimulates a nerve in the ankle can improve bladder control and reduce pelvic pain. The electrical device targets a nerve just above the ankle which is linked to the nerves that control the bladder.
Doctors carrying out the once-aweek outpatient treatment know they have hit the right spot because stimulating the nerve also makes the toes curl up.
Research shows that the treatment, which will be available in the UK from this month, can significantly reduce symptoms. The new treatment, made by Uroplasty and called the Percutaneous Tibial Nerve Neuromodulation, uses a small needle electrode, a surface electrode, a lead wire and a handheld electrical generator.
The needle is inserted into the skin close to the tibial nerve. After the wire and electrode are attached to the needle, the generator provides an electrical pulse which is allowed to flow to the nerve which regulates bladder control.
Age: 44 | Onset Age:41 | Symptoms: abdominal pain and discomfort, urinary frequency, low libido | Helped By: quercetin, diazepam, neurontin, Elavil | Worsened By: sex, alcohol, caffeine
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webslave
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Post by webslave »

This looks interesting. Thanks.
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kenn101
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Post by kenn101 »

The SANS treatment has shown a lot of promise and the PTNS looks like a copy of Dr. stollers work. SANS has been touted as a less evasive treatment than the SNS or interstim therapy. Dr Stollers research did show that intensity levels and time must be strictly maintained and not exceded or it can cause the opposite effect of increased pain. Stoller first worked with a modified TENS unit. I wish that the SANS treatment was avaible here in British Columbia as I would like to try it.
I HAVE NO MEDICAL TRAINING JUST CPPS

Age:48 | Onset Age: 39 | Symptoms:mod to extreme Pain in testicle (both), right epididymis, lower back lower right and centre abdomen. Urination frequency and urgence, decreased or no urine stream, ED, night time incontinence after riding in a vehicles or too much movement. | Helped By: eating ice frequency by Elavil, urine stream by Hytrin or Flomax. Pain control Methadone and Hydromorphone but more so by Triamcinolone epidurals. | Worsened By: Too much movement, SSRI's, Hot baths or showers. eating warm or too much food,DMSO treatments. Frequency by caffeine, stress or SSRI's.
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Study: PTNS effective for CPPS

Post by kevin »

I wonder what sham treatment they used.
Efficiency of posterior tibial nerve stimulation in category IIIB chronic prostatitis/chronic pelvic pain: a Sham-Controlled Comparative Study.
Kabay S, Kabay SC, Yucel M, Ozden H.

Department of Urology, Dumlupinar University Faculty of Medicine, Kutahya, Turkey. [email protected]

OBJECTIVES: To evaluate the efficacy of percutaneous posterior tibial nerve stimulation (PTNS) for treatment of the patients with category IIIB chronic non-bacterial prostatitis/chronic pelvic pain syndrome. METHODS: A total of 89 patients with therapy-resistant pelvic pain were randomized to receive either nerve stimulation (n = 45) or sham treatment (n = 44). The National Institutes of Health Chronic Prostatitis Symptom Index and visual analogue scale were used to assess treatment success after 12 weeks of intervention. Objective success was defined as a minimum 50% decrease in the mean scores. A decrease of over 25% to below 50% was considered to be a partial response. RESULTS: An objective response was observed with the pain and symptom scores after 12 weeks of PTNS in 18 (40%) and 30 (66.6%) of the patients, whereas a partial response was observed in 27 (60%) and 15 (33.3%) of the patients, respectively. Mean symptom scores and visual analogue scale scores for pain and urgency were significantly changed from 23.6 +/- 6.3 at baseline to 10.2 +/- 3.6, 7.6 +/- 0.8 at baseline to 4.3 +/- 0.6, 5.7 +/- 0.8 at baseline to 3.4 +/- 0.7, respectively. Scores for the symptoms, urgency and pain were not changed with sham treatment. CONCLUSIONS: These results have demonstrated that percutaneous PTNS may relieve pain in the patients with category IIIB chronic non-bacterial prostatitis/chronic pelvic pain syndrome.
Started: Spring 2003; high urinary frequency and pain associated with bladder filling; urinary hesitancy; pubic/prostate/perineal discomfort; Helped by: trigger point therapy, Afrin nasal spray, Cymbalta, hydrocodone (small doses), distraction. Makes worse: sex.

Not medical advice. Consult your doctor.
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webslave
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Re: Study: PTNS effective for CPPS

Post by webslave »

Study comes from unknown center in Turkey. All my defences are up.

:wink:
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gmccormack
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Re: Study: PTNS effective for CPPS

Post by gmccormack »

If your interested in PTNS get the full PDF report on "Percutaneous Tibial Nerve Stimulation as Neuromodulative Treatment of Chronic Pelvic Pain" from the Netherlands

Journal: European Eurology

It does a good job of explaining what they did, size of needle, duration of treament, etc

I have only the hard copy as I was using someone elses ID to get access to it. I will scan it and post if its important to anyone.
27% greater than 50% improvement
16% had partial improvement (less than 50%)
So that's 43% responders
I don't know if you would call this a success or not...maybe a bigger trial is needed but it appears very safe.

The patient profiles were shocking, I know who we have on this board but take a step back and millions of men have this and have done drastic things. They detail out each patient, we're talking TURPS, TUMT', dorsal penile vene litigation, nephrectromy, epidymectomy and many vasectomies. Average age is mid - late 40's probably a bit older than the group on this site.

In response to sham treatment, this group found it impossible because people that had signed up for the trial were too knowledgeable about new and novel treatments. If they stuck a needle in the region of the tibial nerve as they do in the non sham treatment it could possibly have a positive impact. They said they may try using an acupuncture needle with electricity as the sham but patients may know if they did their homework before the trial.
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superuse
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Re: Study: PTNS effective for CPPS

Post by superuse »

Thats pretty interesting. There was some debate and criticism of different studies and procedures on other sites lacking placebo or sham studies. Webslave correctly noted that some procedures are easier to set up and some impossible or impractical to do that way. (sham surgery can be difficult or impossible to justify to the ins co or ethically.) Much easier to do in non- invasive imagery,pills,injections, where the stuff can be hidden or procedure out of the patients control. Developing a placebo Wise protocol,involving all its steps psychologically and physical therapy would be impractical, and probably not useful given its nature.

I believe the published study of the W-A protocol had about 30% no change. More or less. I wonder what percentage of the no-small responders for both studies had multiple surgeries/procedures before treatment and the nature of the treatment(s). I wonder what percentage of the excellent/good responders were "virgins" (no or minimal treatment beforehand). Perhaps no correlation at all. Perhaps large correlation. I don't know if Dr. Wise excluded previous coccyx removals,surgeries, many injections etc out of his 130 odd study group . I don't think he did. Like the other study many find themselves in treatment only after multiple other unsuccessful invasive procedures. It may be difficult or lengthy to find 130 odd relative "virgins" with considerable pelvic pain.

The stats you cite are sobering. Millions of people in the world suffering symptoms. One of the more exotic surgical solutions involving the pudendal nerve has maybe 600 or so procedures worldwide per year done, perhaps mainly by 7 surgeons. Maybe 7000 total done worldwide in 20 years. Very mixed results to say the least from what I have observed. If one figures at least 3000 English speakers out of the 7000 there are only really perhaps 100 or so people recording their results from beginning to end on the various forums. I don't think this can even rate as experimental surgery even though some are successful in getting insurance reimbursement as such.

Very few studies from the Docs. Perhaps 20-40 million +men and women worldwide experiencing pelvic pain problems, and out of the thousand or so patients going to the 7 or so surgeons worldwide, it seems 80+ percent (reporting randomly on the different boards) test positive for the surgery. If done (very) mixed results seem to follow. From the few each year who report. I see people understandably aren't very talkative about this on any forum.

According to the AMA there are about 500,000 heart bypasses done in the U.S alone each year. Doing the math is well , sobering. Considering all treatments.

So many people, and so under-researched? Uros in the western world must see at least one case a month or two, their entire careers, yet each man/woman is many times labeled a solitary nutcase after no response to std treatments. One uro I visited years ago basically told me he gets one or so young men a month with the mystery problem his 20 years of practice. I wonder why most urologists don't tell the patient this rather than GiT-MO? (GET THIS nutter outta MY OFFICE) Can ins cos reimbursing for follow up visits so poorly really provoke (what seems as)such a mass response? I think the webslave has suggested they get paid for (some invasive) procedures, and that's what you'll get

Weird.

--jjf
Age:43 | Onset Age:36 | Symptoms: First urinary and backside, golf ball feeling, now ok (no heavy exercise) . Major onset seemed to be with heavy coughing spell , felt "tearing" or nerve pain in rectum/prostate. | Helped By:Hot showers,sleep.Worsened By: Type A obsessiveness ... Stressing, what-if thinking, weights.
Not a doctor. -

The usual... anxiety prone programmer (my case), accountant, lawyer or self employed sitting 50 hrs/week combined with compulsively exercising on a bike,weights or running to compensate for stress. Also aka "graduate student syndrome" New email sigma556@hotmail
gmccormack
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Re: Study: PTNS effective for CPPS

Post by gmccormack »

Superuse,

You bring up some hot issues, I understand your points. I was merely posting the study results from a PTNS study sort of in response to Kevin (sham treatment question) and webslave.

My secondary point was that I was shocked at how many invasive surgeries people have had. When I was at the Wise clinic, 16 people, 3 had had TURPS. I guess that didn't seem that big but in this study over 60% of the men had an invasive surgery done prior. Refraining from a long debate here I think that after a given number of years of failing treatments every man has his breaking point where he says operate, whether it be TURP to castration. I don't think its necessarily the doctors fault however; the patient complains in tears and the Dr wants to help and invasive surgery is a shot in the dark that could hit the jackpot — it's all speculation.

When I first got this I was sure Dr Krongrad was the answer. Remove my prostate and I would be cured; end of story. Today, I am thankful I did not do that. Certainly, some men do not back off, and do not find this site, and they get invasive surgery. All the men at the clinic who had TURPS were Europeans by the way. It made them worse.

I am sick of seeing PNE theories and stories and hope it fades away like other treatments of its kind.
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Jay
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Re: Study: PTNS effective for CPPS

Post by Jay »

I find the statistics on surgical patients to be unfortunate, but I am not surprised by them. Most of us are raised to believe that modern medicine has all of the answers, and that it's unwise to question your doctor's assertions. Thus, a lot of sad stories.

Urology is a surgical specialty. When surgery is your hammer, every problem is viewed as a nail. This is not to say that all urologists are inept and uncaring, but sometimes, their well-meaning acts can make things worse for CPPS. In this sense, I am glad that my medical paranoia held me back from making any quick decisions. The last urologist I saw, some years ago now, was a very good person who was clearly torn up over seeing me in pain. Young, which I think is good, because they tend to be less jaded. His last ditch suggestion was to insert a probe up the urethra and into the prostate, where it would use heat to burn away a portion of the gland. A microwave therapy. I declined, and instead asked him to humor me with a PT referral, which he did.

I have nothing against novel treatments coming along, so long as the top concern is the patient's safety. Above all else, do no harm. Those who promote treatments such as prostate removal infuriate me to no end, because they are victimizing patients on the basis of bogus science. It has long been known that prostate removal is almost never curative, but it does often make things worse. With PNE, I don't even know where to start. I can't name another condition which has so little peer-reviewed literature after so many years of surgical treatment. Give me some hard, verified statistics with a sizable followup period.
I am not a physician. This is not medical advice. Consult your doctor!

Age: 26 Onset Age: 17 Symptoms: Shooting, nerve-like pains throughout the penis, which abruptly hit and leave. Testicular pain, perineum pain, burning/irritative urination, extended pain after ejaculation. Occasionally, some allodynia or ache in the coccyx/sacrum/thigh/buttocks/legs. Diagnosis: Pelvic floor dysfunction, degenerated lumbar disk, and mildly herniated lumbar disk. Helped By: Physical therapy, pain management doctor, hot baths, therapy pool, stretching regimen, breathing exercises, relaxation, distraction. Worsened By: Arousal/ejaculation (worst), constipation, panicking/obsessing, other triggers depend upon current symptoms. Tests/Prior Treatments: Too many antibiotics to count, multiple urine tests (all normal), testicular ultrasound (normal), bladder and renal ultrasound (normal), lumbar and pelvic MRI with and w/o contrast (revealed disk problems), Elavil 25mg (caused retention), Flomax 0.4mg.
superuse
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Re: Study: PTNS effective for CPPS

Post by superuse »

On a similar note, a recent quote from a new member of another site — time and time again, body parts cut/removed. Of course the newly joined site is a surgical one:
xxxxx

Joined: xxxxx 2010
Posts: 7
Location: CA
Posted: Wed Jul, 2010 pm Post subject: Testicle Pain

--------------------------------------------------------------------------------

I started having left side testicle pain in late 2008. I had an epididymectomy, which did not help. I ultimately had the testicle removed (orchiectomy), but I still have the same pain.

Is there anyone else out there who has had referred pain that showed itself as testicle pain, and what was the ultimate source of the pain found to be?

Thanks,

xxxx
Age:43 | Onset Age:36 | Symptoms: First urinary and backside, golf ball feeling, now ok (no heavy exercise) . Major onset seemed to be with heavy coughing spell , felt "tearing" or nerve pain in rectum/prostate. | Helped By:Hot showers,sleep.Worsened By: Type A obsessiveness ... Stressing, what-if thinking, weights.
Not a doctor. -

The usual... anxiety prone programmer (my case), accountant, lawyer or self employed sitting 50 hrs/week combined with compulsively exercising on a bike,weights or running to compensate for stress. Also aka "graduate student syndrome" New email sigma556@hotmail
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Re: Study: PTNS effective for CPPS

Post by gmccormack »

Not many active members here thankfully have had such surgeries, however, in my time spent researching CPPS we are such a small percentage of sufferers and I myself sometimes have become delusional in that the only ones suffering from this are on this site. When all doctors have given up on you and you find one willing to "do something," (ie surgery) even today I would have a hard time not considering it.

If I was not so research-happy I could have very well had a prostatectomy by now...
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superuse
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Re: Study: PTNS effective for CPPS

Post by superuse »

What's weird is if your finger or toe hurt constantly or chronically, almost every doc would be looking for something higher up in the spine elbow, or neck. The concept of cutting off the digit soon or even after time would not be thought of (mostly). The caveman thinking of cutting off the toe to stop toe pain would not be very present.

But when it comes to testicles and such far more important (and sensitive), with there are numerous men posting their experiences with "testicle hurt? --Grogg cut off-- make better" from the drs, in a far more complex area.

Very weird situation

--jjf
Age:43 | Onset Age:36 | Symptoms: First urinary and backside, golf ball feeling, now ok (no heavy exercise) . Major onset seemed to be with heavy coughing spell , felt "tearing" or nerve pain in rectum/prostate. | Helped By:Hot showers,sleep.Worsened By: Type A obsessiveness ... Stressing, what-if thinking, weights.
Not a doctor. -

The usual... anxiety prone programmer (my case), accountant, lawyer or self employed sitting 50 hrs/week combined with compulsively exercising on a bike,weights or running to compensate for stress. Also aka "graduate student syndrome" New email sigma556@hotmail
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