Arora,
A couple of us old-timers, Sunil who has had PN for a little less than 40 years and myself who has had pelvic pain for 27 years and PN for 8 years, are markedly improving and not done yet as we are in ongoing recovery. 9 years isn't much: Sad to say, it is not uncommon to take that long to get a diagnosis, locate appropriate treatment, get through a specialist's waiting list, and fight for insurance coverage. So I would say 9 years is probably a common time frame from onset to appropriate intervention, and yet some people are cured. I have yet to know if i will be one of them but my recovery is going very well so I am hopeful.
PN Surgery?!
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HerMajesty
- Posts: 1134
- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: PN Surgery?!
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: PN Surgery?!
Aurora,
We've had people post after having this for 15 and even 30 years who were doing much better after surgery.
Violet
We've had people post after having this for 15 and even 30 years who were doing much better after surgery.
Violet
Last edited by Violet M on Sun Dec 23, 2012 2:37 am, edited 1 time in total.
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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AroraNightfire
- Posts: 60
- Joined: Mon Mar 12, 2012 9:39 pm
Re: PN Surgery?!
Violet,
Who has had pn for over 30yrs and has improved from surgery? I would like to contact these people.
Who has had pn for over 30yrs and has improved from surgery? I would like to contact these people.
Re: PN Surgery?!
It was a guy named Ron who went to Dr. Hibner for surgery. He used to post on our old forum which, unfortunately is no longer available so I'm not sure how to contact him.
The gal who improved after 15 years was a patient of Dr. Bautrant's who posted on the old forum also. She was from Italy and last I heard she was doing very well. I've just sent her an e-mail to see how she is but I don't know if it's a current e-mail. I'll let you know if I hear back.
Violet
The gal who improved after 15 years was a patient of Dr. Bautrant's who posted on the old forum also. She was from Italy and last I heard she was doing very well. I've just sent her an e-mail to see how she is but I don't know if it's a current e-mail. I'll let you know if I hear back.
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.
Re: PN Surgery?!
Please feel free to read our forum - other members stories and their signatures. I'm sorry you feel you're the only one who's suffering, and has suffered longer than anyone else.AroraNightfire wrote:Karen I hope you can back up what you just said to me. Who has had symptoms longer than 9years and is now cured? Please do tell.
However, you truly aren't alone. All the information you're seeking is here. Please use this site to your advantage.
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.
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AroraNightfire
- Posts: 60
- Joined: Mon Mar 12, 2012 9:39 pm
Re: PN Surgery?!
Lol Thanks for backing it up.
Re: PN Surgery?!
Hello Aurora,
I have been in contact with Dr. Bautrant in France and he gave me the name of Dr. Mark Conway who has come to work with him in France. Dr. Conway is in New Hampshire and I think I am going to try to see him. So far, I have had a MRI done and spent 1100 bucks on it and it showed nothing. I think that means that the compression could be in the alcock's canal and the machine can't pick it up. What a long haul this is turning out to be....
I have been in contact with Dr. Bautrant in France and he gave me the name of Dr. Mark Conway who has come to work with him in France. Dr. Conway is in New Hampshire and I think I am going to try to see him. So far, I have had a MRI done and spent 1100 bucks on it and it showed nothing. I think that means that the compression could be in the alcock's canal and the machine can't pick it up. What a long haul this is turning out to be....
Re: PN Surgery?!
Hi Jane,
Dr. Conway learned the trans-ischiorectal fossa approach from Dr. Bautrant but he wasn't having very good results with it so he went to Dr. Hibner and Dr. Antolak and learned how to do the transgluteal approach. I think that's the surgical approach he uses now rather than Bautrant's approach.
You may have posted this somewhere -- did you have a 3T MRI? Pudendal nerve entrapment doesn't typically show up on MRI's although some people have had 3T MRI's from Dr. Hollis Potter in NYC that showed entrapments. You're right, it's a long haul and you have to sort of team up with your docs to become a detective to figure out what's going on.
Violet
Dr. Conway learned the trans-ischiorectal fossa approach from Dr. Bautrant but he wasn't having very good results with it so he went to Dr. Hibner and Dr. Antolak and learned how to do the transgluteal approach. I think that's the surgical approach he uses now rather than Bautrant's approach.
You may have posted this somewhere -- did you have a 3T MRI? Pudendal nerve entrapment doesn't typically show up on MRI's although some people have had 3T MRI's from Dr. Hollis Potter in NYC that showed entrapments. You're right, it's a long haul and you have to sort of team up with your docs to become a detective to figure out what's going on.
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.
Re: PN Surgery?!
carolynm, my thoughts exactly. To me, PNE surgery is a big gamble. You may get better or you may get worse. That's a gamble I don't want to take.Yes, I don't think the surgeons are being honest about the success rates either.There is still a lot that the surgeons don't know, and that is the reason you are not seeing great results.carolynm wrote:We have only 1 patient who reports an 80% improvement over on the fb site. Please be sure you know where you are entrapped and that you are having the correct procedure done for that area. Surgery in my mind should not be considered unless you are ready to jump off the bridge. We just do not see great results, friends. And the surgeons are not being honest about success rates.
Just my opinions
Re: PN Surgery?!
I agree surgery is a last resort option and that conservative therapies should be tried first. But if you've tried everything else and you're out of options, have pain 24/7, and no quality of life, there are enough people who have gotten their life back from surgery that it's certainly an option to consider. I would never tell someone to cross it off their list because I know too many people who benefited from surgery.
You just have to consider carefully what your surgery options are and make sure you've ruled out all other possible diagnoses.
Violet
You just have to consider carefully what your surgery options are and make sure you've ruled out all other possible diagnoses.
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.