http://www.cumc.columbia.edu/dept/pelvic/visits.html
Also if you read the posting by Jon and Mary Miller in this thread it is mentioned that nerve conduction studies in the pelvis can help in figuring if nerves are involved.
Any idea where the nerve conduction studies for pelvic are done
anyone been to columbia(pelvic pain)/done nerve cond studies
-
ramana
- Old Hand
- Posts: 343
- Joined: Thu Jul 05, 2007 2:48 am
anyone been to columbia(pelvic pain)/done nerve cond studies
Age:36 | Onset Age: 31 (chronic incomplete evacuation since 29) | Symptoms: Anal fissure (3); Pain in the rectum. Left Testicular pain started in August 2007. Professional PT (5 sessions) in June 2007. Stanford/Wise-Anderson Protocol in July 2007. Back to professional PT from Dec 17 2007 onwards twice a week; Dry needling once a week since March 06 2008. | Helped By: Sleeping; lying down; Thermotex infrared heating pad | Worsened By: Any activity; Medications Lyrica 75 mg* 2, Elavil 10mg Supplements; Cod liver oil ; Natural calm started 02/15; Vitamin B12 started 02/16;Vitamin D 1000U 03//08;Glucosamine+hyaluronic acid+MSM 04/08 Bed ridden since August 2007; Working from bed since Dec 2007 ;Botox done 100 units 04/03/08;RAST for wheat/rye/oats/milk -ve. Dairy free since 04/20/08. Gluten free since 04/25/08;Tried without success so far: Baclofen, PEMF machines, pranic healing reiki ;
-
webslave
- Maintenance
- Posts: 11432
- Joined: Wed Oct 30, 2002 3:18 pm
- Location: Please give your location so we can help better
http://www.cumc.columbia.edu/dept/pelvi ... gnose.html
That would be a good place to go, ramana.The most important diagnostic study in the evaluation of peripheral nerve problems is electromyography (EMG) with nerve conduction studies (NCS). This study provides accurate, quantitative information on the function of nerves and muscles
Good News! The great ProstaQ is BACK at last! You must try it.
| HAS THIS SITE HELPED YOU? Say Thanks by donating. Keep the Forum alive on the Internet! PayPal link at end of page ↓ Contact me at support at ucpps.men |  |
-
robertpagen
- Old Hand
- Posts: 316
- Joined: Thu Mar 18, 2004 4:51 pm
- Location: Beijing, China
columbia U
Since I am from NYC and have good health coverage I in fact did do tests at Columbia back in april to june 2000. at the time their program was still evolving. At the time I found the program to be all test and no treatment.
That having been said I have spoken to uros there as late as Jan 2005 and they seem to have incorporated stanford into their treatment.
note this place is expensive
That having been said I have spoken to uros there as late as Jan 2005 and they seem to have incorporated stanford into their treatment.
note this place is expensive
Age: 43 | Onset Age: 17 | Symptoms: previously: constant urgency, premature ejaculation, burning at tip of penis, pelvic ache current: semi annual flares. | Helped By: PT, yoga, stretch, keeping warm(long johns) boxer briefs, regular sleep routine | Worsened By: cystoscopy, antibiotics (fluoroquinolones) alcohol, coffee, stress, masturbation, cold
-
decal2
- New Member
- Posts: 6
- Joined: Thu Oct 18, 2007 3:42 pm
Columbia center for Pelvic pain
I just spoke with these guys after being very impressed by their website. I was ready to book an apptmnt and will probably still go, but just realize that this isn't actually a "center for pain". It is a series of doctors who got together and decided they each have specialties that could treat pelvic pain. The main guy you see is Dr Winfree, who is a neurosurgeon. He will discuss your problem and make suggestions as to tests and who to see after him.
Has anyone gone to Dr Winfree or this "center"?
Has anyone gone to Dr Winfree or this "center"?
Age: | Onset Age: | Symptoms: | Helped By: | Worsened By:
-
Rufus
- Senior Veteran
- Posts: 259
- Joined: Tue Oct 24, 2006 9:14 pm
I think seeing him is a waste of time.
Age:37 | Onset Age: 35 | Symptoms: pain in testicles that comes and goes that also switches sides-trying to find a pattern as to "why" this happens/Rectal Burn at the 6 O'clock position at my anus which tends to flare around the periphery of my anus typically after defication but no perineum pain-no "golf ball" pain. Pain in testicles worsens as I sit but not always...Pain is not always present but depresses me. Pain used to be at a very high level but has subsided in time to a low level but has not gone away. Pain used to flare after sex but not as much as before although it still like playing russian roulette./
/Lack of SleepHelped By: I haven't found anything that has helped to my knowledge. Tried many many sessions of PT, accupuncture and chiropractic care but still have not found steady relief that takes me back to a pre CPPS state.
/Lack of SleepHelped By: I haven't found anything that has helped to my knowledge. Tried many many sessions of PT, accupuncture and chiropractic care but still have not found steady relief that takes me back to a pre CPPS state.
-
ramana
- Old Hand
- Posts: 343
- Joined: Thu Jul 05, 2007 2:48 am
VeryWorried,
Can you please provide some more details on why you don't recommend him.
I am trying to go there in December.
Can you please provide some more details on why you don't recommend him.
I am trying to go there in December.
Age:36 | Onset Age: 31 (chronic incomplete evacuation since 29) | Symptoms: Anal fissure (3); Pain in the rectum. Left Testicular pain started in August 2007. Professional PT (5 sessions) in June 2007. Stanford/Wise-Anderson Protocol in July 2007. Back to professional PT from Dec 17 2007 onwards twice a week; Dry needling once a week since March 06 2008. | Helped By: Sleeping; lying down; Thermotex infrared heating pad | Worsened By: Any activity; Medications Lyrica 75 mg* 2, Elavil 10mg Supplements; Cod liver oil ; Natural calm started 02/15; Vitamin B12 started 02/16;Vitamin D 1000U 03//08;Glucosamine+hyaluronic acid+MSM 04/08 Bed ridden since August 2007; Working from bed since Dec 2007 ;Botox done 100 units 04/03/08;RAST for wheat/rye/oats/milk -ve. Dairy free since 04/20/08. Gluten free since 04/25/08;Tried without success so far: Baclofen, PEMF machines, pranic healing reiki ;
-
Rufus
- Senior Veteran
- Posts: 259
- Joined: Tue Oct 24, 2006 9:14 pm
Well, I saw him about a week ago and to tell you the truth, there's nothing really different he'll tell you that you won't find out here...
I considered seeing him a gross waste of time and anyone with this condition is better off finding a good PT and getting psych therapy to deal with the depression along wth religious stretching.
It doesn't hurt to be experimental and try accupuncture or whatever else may work, vitamins, herbs, etc, but you're not going to discover anything new with him.
I was told that a multimodal approach is needed in "handling" this condition which comprised of PT, accupuncture and if needed surgery depending on the source of the pain. He said the word "handle" or "manage" as he stressed there is no cure and to remove the word cure from my vocabulary.
Needless to say this upset me greatly as I waited weeks to see this guy, hoping he'd have a means to deliver a silver bullet but instead he not only took away my hope that he'd help but gave me an ambigious response that this condition will either go away on its own one day or I may have to live out my life this way and just learn how to deal.
1.He told me the first step is to rule out infection.
Been there done that with a pile of tests confirming that other than my aching balls that I'm in perfect health...
2.Get CT/MRI scans to rule out other medical issues
Been there done that with all the films proving nothing except some low back disc problems which he said were not responsible for the pain.
3.Start seeing a PT
In the process of seeing one already...
4. See an accupuncturist
Coincidentially I already saw the same accupuncturist on staff at his clinic but for some reason she never mentioned Dr. Winfree...
5.Surgery if necessary.
Being that most of the good advice from him can be found here is the basis why I say don't bother. I found his demenor no different than every other clueless doctor who must take a detached stance when seeing a patient with an inexplicable pain syndrome and is unable to help.
There's a lot of money to be made from our lot while we have it. I say one should try to explore all routes but my visit with this doctor did not reveal anything that I already knew....
I considered seeing him a gross waste of time and anyone with this condition is better off finding a good PT and getting psych therapy to deal with the depression along wth religious stretching.
It doesn't hurt to be experimental and try accupuncture or whatever else may work, vitamins, herbs, etc, but you're not going to discover anything new with him.
I was told that a multimodal approach is needed in "handling" this condition which comprised of PT, accupuncture and if needed surgery depending on the source of the pain. He said the word "handle" or "manage" as he stressed there is no cure and to remove the word cure from my vocabulary.
Needless to say this upset me greatly as I waited weeks to see this guy, hoping he'd have a means to deliver a silver bullet but instead he not only took away my hope that he'd help but gave me an ambigious response that this condition will either go away on its own one day or I may have to live out my life this way and just learn how to deal.
1.He told me the first step is to rule out infection.
Been there done that with a pile of tests confirming that other than my aching balls that I'm in perfect health...
2.Get CT/MRI scans to rule out other medical issues
Been there done that with all the films proving nothing except some low back disc problems which he said were not responsible for the pain.
3.Start seeing a PT
In the process of seeing one already...
4. See an accupuncturist
Coincidentially I already saw the same accupuncturist on staff at his clinic but for some reason she never mentioned Dr. Winfree...
5.Surgery if necessary.
Being that most of the good advice from him can be found here is the basis why I say don't bother. I found his demenor no different than every other clueless doctor who must take a detached stance when seeing a patient with an inexplicable pain syndrome and is unable to help.
There's a lot of money to be made from our lot while we have it. I say one should try to explore all routes but my visit with this doctor did not reveal anything that I already knew....
Age:37 | Onset Age: 35 | Symptoms: pain in testicles that comes and goes that also switches sides-trying to find a pattern as to "why" this happens/Rectal Burn at the 6 O'clock position at my anus which tends to flare around the periphery of my anus typically after defication but no perineum pain-no "golf ball" pain. Pain in testicles worsens as I sit but not always...Pain is not always present but depresses me. Pain used to be at a very high level but has subsided in time to a low level but has not gone away. Pain used to flare after sex but not as much as before although it still like playing russian roulette./
/Lack of SleepHelped By: I haven't found anything that has helped to my knowledge. Tried many many sessions of PT, accupuncture and chiropractic care but still have not found steady relief that takes me back to a pre CPPS state.
/Lack of SleepHelped By: I haven't found anything that has helped to my knowledge. Tried many many sessions of PT, accupuncture and chiropractic care but still have not found steady relief that takes me back to a pre CPPS state.
-
decal2
- New Member
- Posts: 6
- Joined: Thu Oct 18, 2007 3:42 pm
-
webslave
- Maintenance
- Posts: 11432
- Joined: Wed Oct 30, 2002 3:18 pm
- Location: Please give your location so we can help better
That's very true, Rufus, and your exposé of their poor handling of men with chronic prostatitis / chronic pelvic pain syndrome is very welcome.Rufus wrote:There's a lot of money to be made from our lot while we have it.
Good News! The great ProstaQ is BACK at last! You must try it.
| HAS THIS SITE HELPED YOU? Say Thanks by donating. Keep the Forum alive on the Internet! PayPal link at end of page ↓ Contact me at support at ucpps.men | |
-
Rufus
- Senior Veteran
- Posts: 259
- Joined: Tue Oct 24, 2006 9:14 pm
Well I wouldn't go so far as calling it poor but whatever I learned from them I had learned already here so I think there's very little point going to that clinic.
Can you get tests to rule out certain things?
Sure.
Can you get a recommendation to a good PT and an accupuncturist?
Yeah...
They could help I guess but I found that route to be a dead end although it may help others.
Not trying to confuse the issue.
Can you get tests to rule out certain things?
Sure.
Can you get a recommendation to a good PT and an accupuncturist?
Yeah...
They could help I guess but I found that route to be a dead end although it may help others.
Not trying to confuse the issue.
Age:37 | Onset Age: 35 | Symptoms: pain in testicles that comes and goes that also switches sides-trying to find a pattern as to "why" this happens/Rectal Burn at the 6 O'clock position at my anus which tends to flare around the periphery of my anus typically after defication but no perineum pain-no "golf ball" pain. Pain in testicles worsens as I sit but not always...Pain is not always present but depresses me. Pain used to be at a very high level but has subsided in time to a low level but has not gone away. Pain used to flare after sex but not as much as before although it still like playing russian roulette./
/Lack of SleepHelped By: I haven't found anything that has helped to my knowledge. Tried many many sessions of PT, accupuncture and chiropractic care but still have not found steady relief that takes me back to a pre CPPS state.
/Lack of SleepHelped By: I haven't found anything that has helped to my knowledge. Tried many many sessions of PT, accupuncture and chiropractic care but still have not found steady relief that takes me back to a pre CPPS state.
-
carld
- Retired Mod
- Posts: 1554
- Joined: Mon Aug 21, 2006 11:49 pm
- Location: Newbury Park
Great insight and post G,
I just hope that any recently onset Men with CP/CPPS get to this site before they go down the long, disappointing road of no silver bullets. I take refuge in the fact I can control my symptoms by following the many protocols of this site and SP.
I just hope that any recently onset Men with CP/CPPS get to this site before they go down the long, disappointing road of no silver bullets. I take refuge in the fact I can control my symptoms by following the many protocols of this site and SP.
I am not a medical doctor. Please fill out your signature (click here) ☼ ☼ My Starter List for new members
I encourage anxiety prone UCPPS people to consider L-Theanine
Age, 44 onset age 37 Feb 2006 Freq. need to urinate. Sensation of having to urinate soon after going. Perineum discomfort/burning/tightness, pubic area discomfort @ times,poor urine stream, post urine dripping/spray. All symptoms have improved with my protocol. At the worst I give it a 1 to 2 on irritation and discomfort and frequency. Helps: Elavil 5mg for anxiety and mast cell protection, (will only take it as needed) self internal PT as needed, stretching, walking, stairmaster cardio workout and light weights, reducing stress, moment to moment relaxation, deep breathing relaxation and using a Theracane. Makes worse: sitting for long periods, stress, over focusing on it. Currently 95%-98% recovered. Stay positive, relaxed and control your anxiety.
I encourage anxiety prone UCPPS people to consider L-Theanine
Age, 44 onset age 37 Feb 2006 Freq. need to urinate. Sensation of having to urinate soon after going. Perineum discomfort/burning/tightness, pubic area discomfort @ times,poor urine stream, post urine dripping/spray. All symptoms have improved with my protocol. At the worst I give it a 1 to 2 on irritation and discomfort and frequency. Helps: Elavil 5mg for anxiety and mast cell protection, (will only take it as needed) self internal PT as needed, stretching, walking, stairmaster cardio workout and light weights, reducing stress, moment to moment relaxation, deep breathing relaxation and using a Theracane. Makes worse: sitting for long periods, stress, over focusing on it. Currently 95%-98% recovered. Stay positive, relaxed and control your anxiety.
-
ramana
- Old Hand
- Posts: 343
- Joined: Thu Jul 05, 2007 2:48 am
did anyone ask about neuromodulation
http://www.cumc.columbia.edu/dept/pelvi ... ation.html
This is one thing that was interesting to me. In conjunction with SP, I am also looking for ways to alleviate the pain (rather than taking opioids). This was the only place that mentioned neuromodulation. Dr Winfree seems to have mentioned everything except neuromodulation. Any idea why?
Also, I am still not clear on the differences between neuromodulation and spinal cord stimulator. Internet research yields confusing results.
Spinal cord stimulator def. http://en.wikipedia.org/wiki/Spinal_Cord_Stimulator
I was suggested SCS by one doctor but that after research appears to be not of much benefit and also invasive. Not sure what neuromodulation is though
This is one thing that was interesting to me. In conjunction with SP, I am also looking for ways to alleviate the pain (rather than taking opioids). This was the only place that mentioned neuromodulation. Dr Winfree seems to have mentioned everything except neuromodulation. Any idea why?
Also, I am still not clear on the differences between neuromodulation and spinal cord stimulator. Internet research yields confusing results.
Spinal cord stimulator def. http://en.wikipedia.org/wiki/Spinal_Cord_Stimulator
I was suggested SCS by one doctor but that after research appears to be not of much benefit and also invasive. Not sure what neuromodulation is though
Age:36 | Onset Age: 31 (chronic incomplete evacuation since 29) | Symptoms: Anal fissure (3); Pain in the rectum. Left Testicular pain started in August 2007. Professional PT (5 sessions) in June 2007. Stanford/Wise-Anderson Protocol in July 2007. Back to professional PT from Dec 17 2007 onwards twice a week; Dry needling once a week since March 06 2008. | Helped By: Sleeping; lying down; Thermotex infrared heating pad | Worsened By: Any activity; Medications Lyrica 75 mg* 2, Elavil 10mg Supplements; Cod liver oil ; Natural calm started 02/15; Vitamin B12 started 02/16;Vitamin D 1000U 03//08;Glucosamine+hyaluronic acid+MSM 04/08 Bed ridden since August 2007; Working from bed since Dec 2007 ;Botox done 100 units 04/03/08;RAST for wheat/rye/oats/milk -ve. Dairy free since 04/20/08. Gluten free since 04/25/08;Tried without success so far: Baclofen, PEMF machines, pranic healing reiki ;
-
ramana
- Old Hand
- Posts: 343
- Joined: Thu Jul 05, 2007 2:48 am
Oops sorry. On rereading yes both neuromodulation and SCS are the same.
Age:36 | Onset Age: 31 (chronic incomplete evacuation since 29) | Symptoms: Anal fissure (3); Pain in the rectum. Left Testicular pain started in August 2007. Professional PT (5 sessions) in June 2007. Stanford/Wise-Anderson Protocol in July 2007. Back to professional PT from Dec 17 2007 onwards twice a week; Dry needling once a week since March 06 2008. | Helped By: Sleeping; lying down; Thermotex infrared heating pad | Worsened By: Any activity; Medications Lyrica 75 mg* 2, Elavil 10mg Supplements; Cod liver oil ; Natural calm started 02/15; Vitamin B12 started 02/16;Vitamin D 1000U 03//08;Glucosamine+hyaluronic acid+MSM 04/08 Bed ridden since August 2007; Working from bed since Dec 2007 ;Botox done 100 units 04/03/08;RAST for wheat/rye/oats/milk -ve. Dairy free since 04/20/08. Gluten free since 04/25/08;Tried without success so far: Baclofen, PEMF machines, pranic healing reiki ;
-
kevin
- Retired Mod
- Posts: 458
- Joined: Tue Aug 03, 2004 2:23 am
- Location: USA
Re: did anyone ask about neuromodulation
Neuromodulation is a very general term meaning electrical stimulation of the nerves in any part of the body. One technique that is frequently used for people with symptoms of urinary frequency/urgency and voiding dysfunction (LUTS) is sacral neuromodulation, also called sacral nerve stimulation. The commercial name is InterStim. There's also percutaneous tibial nerve stimulation.ramana wrote:http://www.cumc.columbia.edu/dept/pelvi ... ation.html
This is one thing that was interesting to me. In conjunction with SP, I am also looking for ways to alleviate the pain (rather than taking opoids). This was the only place that mentioned neuromodulation. Dr Winfree seems to have mentioned everything except neuromodulation. Any idea why?
Also, I am still not clear on the differences between neuromodulation and spinal cord stimulator. Internet research yields confusing results.
Spinal cord stimulator def. :http://en.wikipedia.org/wiki/Spinal_Cord_Stimulator
I was suggested SCS by one doctor but that after research appears to be not of much benefit and also invasive. Not sure what neuromodulation is though
For chronic pain, non-invasive TENS is used. There are also more invasive procedures, like a dorsal column stimulator. These are when a stimulator is implanted directly into the spine. It's meant for severe, intractable cases of pain. Most urologists do not use these; a pain doctor would be a better bet.
Hope that helps clear things up for you. For slightly technical review articles, check out:
Spinal cord stimulation: http://www.minervamedica.it/pdf/R02Y200 ... 7A0471.pdf
Lower urinary tract neuromodulation: http://ep.physoc.org/cgi/reprint/84/1/149
The IC network also has some literature on neuromodulation, I believe.
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.
Not medical advice. Consult your doctor.