Thanks, Lernica!!! Welcome to the team!
How do you manage to swim in the winter? Health club?
Love,
Karyn
How does weight lifting affect the pudendal nerve?
Re: How does weight lifting affect the pudendal nerve?
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Re: How does weight lifting affect the pudendal nerve?
Griff - I'm with you - no drugs!! I just don't want to take them - brain fog, constipation, weight gain, ugh.... I honestly think pain is almost preferable to that - but every SINGLE DOCTOR wants to put you on something! You know - they are "body mechanics" and worse yet - they don't even work at an independent where they have to work on everything - they are darn specialists (ie. tune up only at a Honda dealership!). My sweet hubby who is quite skilled technically and mechanically doesn't get it either. He has offered to open me up and fix me if he only knew how - poor dear, I almost hate putting him through this more than what I'm going through myself. He, like me, does not understand how modern medicine can do everything from face transplants, to heart surgery, to complex brain surgery, etc and can't fix this nerve. Here's a funny one - you know the poor State Rep, Giffords, that was shot? She is in Houston for rehab so one local major hospital has been running these commercials on their MIRACULOUS neurology depart. I couldn't help but sarcastically snicker at that commercial - they can help people with near fatal brain injuries, but can fix a PN nerve...... go figure.......
Karyn - yes, we are so very lucky to have this board. The only thing I consider fortunate about this condition is 1) at least I learned about it quickly (still trying to figure if that is beneficial or not and 2) the fabulous people we have met in this sad area of cyberspace. Why doesn't this happen to mean, evil people?????
Lernica - thanks for joining the squad Wish we all weren't here..... none of us deserve this hell. Looks like from your signature line you are a "former" athlete, too - it's so hard not to be. Is your back/hip pain from PN? Just wondering because I have SIJD (as well as sacroiliac arthritis) - so maybe your pain isn't all PN? So I guess I'll modify down my activities to a degree - at least stop the lower body weights (or at least the squats/lunges) - but I just can't give it all up yet, I mentally just can't do it. As for swimming - never learned how - guess I need to learn - lol.
Karyn - yes, we are so very lucky to have this board. The only thing I consider fortunate about this condition is 1) at least I learned about it quickly (still trying to figure if that is beneficial or not and 2) the fabulous people we have met in this sad area of cyberspace. Why doesn't this happen to mean, evil people?????
Lernica - thanks for joining the squad Wish we all weren't here..... none of us deserve this hell. Looks like from your signature line you are a "former" athlete, too - it's so hard not to be. Is your back/hip pain from PN? Just wondering because I have SIJD (as well as sacroiliac arthritis) - so maybe your pain isn't all PN? So I guess I'll modify down my activities to a degree - at least stop the lower body weights (or at least the squats/lunges) - but I just can't give it all up yet, I mentally just can't do it. As for swimming - never learned how - guess I need to learn - lol.
Re: How does weight lifting affect the pudendal nerve?
Actually LOTS of people have been relieved of PN pain in Houston, only none of them had a Hollis Potter 3T MRI telling them it couldn't be done.scaredgal wrote:Here's a funny one - you know the poor State Rep, Giffords, that was shot? She is in Houston for rehab so one local major hospital has been running these commercials on their MIRACULOUS neurology depart. I couldn't help but sarcastically snicker at that commercial - they can help people with near fatal brain injuries, but can fix a PN nerve...... go figure.......
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
Re: How does weight lifting affect the pudendal nerve?
Celeste - I guess my point is that - yes, some people have been helped by Renney/Poponey/Ansell team - that's good. And I commend them for bringing the condition and it's possible treatment to the US as they have laid the foundation for many other physicians. But as far as I'm concerned, diagnosis and treatment of PNE has not advanced like it should. Yes, there are 100% cures - but even the Houston team will tell you that is rare! Honestly, I think the success rate should be better. Sure, being helped 50%, 60%, even 30% is good - but where is the analysis on why it's not 100%? I know neurology is complex, but so are other conditions. A 60% cure rate for cancer is not acceptable - that means it continues to grow and the patient will die. Why are we settling (and why are the doctor's settling) with a 60% rate for PN?
Re: How does weight lifting affect the pudendal nerve?
PNE is a rotten thing to have, and I'm pretty sure all of the doctors are grateful for whatever relief they can bring to people. I don't think any of them are "settling" for what you think is too low of a result. I'm not sure you can compare PNE to cancer at all, considering that cancer is a whole list of diseases depending on which organ is affected. Some have a high cure rate, others remain a death sentence.
I guess you could ask, why isn't formal research being done. The answer would probably be that it's expensive especially for a problem that doesn't affect a large number of people.
What I do know is that no formal research into the validity of Dr. Potter's claims for correlation has been done. So far we have a couple of people with pain in the path of the pudendal nerve who went forward with surgery based on the findings. It was only a matter of time until we had someone with pain in the path of the pudendal nerve who would choose not to have surgery based on the findings.
I suppose a lot depends on how much of a person's life they would allow to elapse waiting for a perfect guarantee of diagnostics vs. treatment. The only reason we have the information that we do have is because of doctors and patients who went forward and tried.
I guess you could ask, why isn't formal research being done. The answer would probably be that it's expensive especially for a problem that doesn't affect a large number of people.
What I do know is that no formal research into the validity of Dr. Potter's claims for correlation has been done. So far we have a couple of people with pain in the path of the pudendal nerve who went forward with surgery based on the findings. It was only a matter of time until we had someone with pain in the path of the pudendal nerve who would choose not to have surgery based on the findings.
I suppose a lot depends on how much of a person's life they would allow to elapse waiting for a perfect guarantee of diagnostics vs. treatment. The only reason we have the information that we do have is because of doctors and patients who went forward and tried.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
Re: How does weight lifting affect the pudendal nerve?
Scaredgal and Karyn,
So far my condition has been diagnosed (by a neurologist/pain doctor) as strictly PN, after seeing my lumbro sacral MRI. So I'm being treated only for that condition. But I must say it's hard to believe that a single nerve in the pelvis can cause the extreme disability that I have . . .
I'll start seeing a pelvic floor physiotherapist in February (there is only ONE in my city). She may come up with another diagnosis. My "dream" outcome of my visits with her is that she will find some misalignment in the pelvis which, once corrected, will decompress the pudendal nerve and allow me to walk again! I know that that is an unrealistic outcome since even after such a correction, the nerve would take a long time to heal. So I am prepared for that. I am also prepared for a long and slow recovery.
Swimming ROCKS! During the winter I swim at the local Y, and during the summer I swim at an outdoor pool at the local community centre. In addition to the benefits I have already described, swimming also allows me to feel like an athlete again despite not being able to walk! If you swim at the same time every day, you often meet athletes who have had to take up swimming after their joints have worn out, and you can develop a whole new set of athletic buddies. So please do try it. You will have to join a health club with a pool that is at least 25 metres long and that has dedicated lanes for lane swimming. And you will need a bathing cap and a good pair of goggles.
TTYL,
Lernica
So far my condition has been diagnosed (by a neurologist/pain doctor) as strictly PN, after seeing my lumbro sacral MRI. So I'm being treated only for that condition. But I must say it's hard to believe that a single nerve in the pelvis can cause the extreme disability that I have . . .
I'll start seeing a pelvic floor physiotherapist in February (there is only ONE in my city). She may come up with another diagnosis. My "dream" outcome of my visits with her is that she will find some misalignment in the pelvis which, once corrected, will decompress the pudendal nerve and allow me to walk again! I know that that is an unrealistic outcome since even after such a correction, the nerve would take a long time to heal. So I am prepared for that. I am also prepared for a long and slow recovery.
Swimming ROCKS! During the winter I swim at the local Y, and during the summer I swim at an outdoor pool at the local community centre. In addition to the benefits I have already described, swimming also allows me to feel like an athlete again despite not being able to walk! If you swim at the same time every day, you often meet athletes who have had to take up swimming after their joints have worn out, and you can develop a whole new set of athletic buddies. So please do try it. You will have to join a health club with a pool that is at least 25 metres long and that has dedicated lanes for lane swimming. And you will need a bathing cap and a good pair of goggles.
TTYL,
Lernica
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
Re: How does weight lifting affect the pudendal nerve?
Celeste - well in my case, Dr. Ansell (who I do respect for his knowledge) did not recommend surgery. If he had given me some positive indication that I may have a problem unrelated to the MRI, I might have considered it - but he flatly did not. So I guess you could say it was my respect for his very frank reply to me, which I do respect, that helped me make my decision. And I would like to emphasize this to everyone on the board - the Houston team is not surgery-happy - I do think they are doing this honestly; otherwise, Dr. Ansell would have quickly suggested surgery to pad his pocket, regardless of the patient history. The other thing is - TR surgery is not to be considered lightly - it is surgery and surgery that does cut into muscle and ligaments. And with any surgery comes risk. So if I have a very knowledgeable, seasoned neurosurgeon telling me that he doesn't feel his surgery can help me - based not only on my MRI, but his examination of my areas of pain (or lack thereof), I'm certainly not going to just "take a chance".
Re: How does weight lifting affect the pudendal nerve?
Hi Lernica,
I hope you find success with your PT visit! Remember a lumbo-sacral MRI or CT cannot diagnose SIJD or other biomechanical issues. Also, I would like to think that perhaps if the nerve is not damaged, but impinged and if released, will recover quickly. I found that when I was at my worst with SIJD, that it forced an entire havoc on my kinetic chain - I had piriformis issues, glute med trigger points, lumbar spasms, tensor fascia lata and IT band issues, plantar fasciitis, insertional achilles tendonitis, hip flexor tightness - you name it!
When I had my really bad SI problems a few years back, I did some water aerobics at my gym with the 70's and 80's crowd Maybe time to join the Sr. Citizen club again......(well, maybe not yet, I'm still pushing......)
I hope you find success with your PT visit! Remember a lumbo-sacral MRI or CT cannot diagnose SIJD or other biomechanical issues. Also, I would like to think that perhaps if the nerve is not damaged, but impinged and if released, will recover quickly. I found that when I was at my worst with SIJD, that it forced an entire havoc on my kinetic chain - I had piriformis issues, glute med trigger points, lumbar spasms, tensor fascia lata and IT band issues, plantar fasciitis, insertional achilles tendonitis, hip flexor tightness - you name it!
When I had my really bad SI problems a few years back, I did some water aerobics at my gym with the 70's and 80's crowd Maybe time to join the Sr. Citizen club again......(well, maybe not yet, I'm still pushing......)
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Re: How does weight lifting affect the pudendal nerve?
Celeste, does this comment mean that you are of the opinion that the Hollis Potter 3T is "over-read", or to put it another way, that she is putting too much importance onto findings that are really artifacts? I haven't formed an opinion about that but you kind of sound like you have, so I am just interested in hearing your analysis of the Hollis Potter 3T.Celeste wrote: Actually LOTS of people have been relieved of PN pain in Houston, only none of them had a Hollis Potter 3T MRI telling them it couldn't be done.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
Re: How does weight lifting affect the pudendal nerve?
HM, I'm of the opinion that we don't know if her images should be the deciding factor in whether somebody has surgery for pain in the path of the pudendal nerve. They're based on some software she wrote, and I personally wonder who validated that, and how. I am concerned that nobody has, and that maybe it isn't reliable. The pain is still there for people who have been told they aren't entrapped...and there are a variety of ways the pain can present in this population.HerMajesty wrote:Celeste, does this comment mean that you are of the opinion that the Hollis Potter 3T is "over-read", or to put it another way, that she is putting too much importance onto findings that are really artifacts? I haven't formed an opinion about that but you kind of sound like you have, so I am just interested in hearing your analysis of the Hollis Potter 3T.Celeste wrote: Actually LOTS of people have been relieved of PN pain in Houston, only none of them had a Hollis Potter 3T MRI telling them it couldn't be done.
I think Dr. Potter completely believes in her images, and I see that her patients most definitely do, too. They WANT more predictive images. My opinion is that the PNE doctors aren't sold on them. They don't believe. At this time it's all on the patients to sell these to the doctors. I think all of the doctors will be "nice" about it, but some will be more actively confrontational about it and others will be more passive. I completely believe that when a doctor encounters a patient who really believes the scans, they will be more than happy to let that patient go off and pursue whatever they think the scan is directing them to rather than trying to convince them out of their beliefs in any way. I think all PNE doctors feel their patients will have a better outcome if the patient wants what the doctor offers. I don't think there is a single one of them that wants Dr. Potter or her images telling them how to do their job.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org