Farewell to Tipna (www.tipna.org) party, Feb 4

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Farewell to Tipna (www.tipna.org) party, Feb 4

Postby GregT » Wed Jan 30, 2013 6:25 am

Hey, this is Greg Thibeaux from http://www.tipna.org. Tipna stands for The International Pudendal Neuropathy Association and many of you may have been members of the website at some point in time. Anyway, we're no longer going to be on the internet any more because there is another PN website that is doing a great job and there no longer is a reason for us to be in existence. By the way, their website is http://www.pudendalhope.org. (This is the PM that I sent to most of our members)

As a way of celebrating what we've accomplished over the years and to just have one last get together, we're going to be getting together on February 4, 2013 (maybe for most of the day, time frame not yet established). If you want to be able to join but you don't remember your screen name or password, then send me back a PM (or send an email to admin@tipna.org) and I'll help you to get your screen name and password (which I may have to reset) so that you can participate.

Please get in touch with me as soon as possible if you'll need me to help you with your screen name or password. Everyone is welcome.

Greg
Had surgery in Nantes, France in 2001 with Professor Robert. Still have some contact with his program.
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Re: Farewell to Tipna (www.tipna.org) party, Feb 4

Postby Karyn » Wed Jan 30, 2013 3:15 pm

Hi Greg,
Thanks so much for extending the invite! I hope to be able to attend.
Also, thank you for all of the hard work and support you've provided over the years to people seeking direction and comfort. Your efforts in this area have been truly valiant and commendable.
Kindest of regards,
Karyn
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.
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Re: Farewell to Tipna (www.tipna.org) party, Feb 4

Postby catherine a » Thu Jan 31, 2013 2:55 am

Thank you Greg for initiating TIPNA. Without the support and information I found on TIPNA I wouldn't be where I am today. 8 years on I do have my life back. Some pain still exists but not to the extent I had when I frantically surfed the net and found others who were suffering the same fate when I thought I was the only one. Many doors have opened since and it's great to see more and more health care professionals take this on board.

Without TIPNA we wouldn't have HOPE. We have struggled together and suffered together through these long years. I often think of those who suffered in the past before the internet existed. Years ago we would've been locked up.

Catherine A
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
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Re: Farewell to Tipna (www.tipna.org) party, Feb 4

Postby LottaNerve » Fri Feb 01, 2013 2:23 am

Greg, I'm so glad I checked in and saw your post. I haven't been online for quite a while so it was fortunate timing. I am grateful to TIPNA for being there when I had nowhere else to go. I have made many friends between TIPNA and pudendalhope. I will plan on checking in on Feb. 4! Thank you so much.
http://icandpne.wordpress.com
1995 First symptoms of PNE and IC
8/2010 Dr. Hibner, left TG- failed surgery.
3/2011 & 10/2011 - Dr. Dellon, left dorsal/perineal neurolysis -also failed.
1/2012 3-day ketamine infusions. Pain-free for several days! Bladder flared from IC.
11/2012 Intrathecal pain pump (bupivacaine, clonidine, morphine) Dr. Joshua Prager, UCLA.
2/13 My pain is reduced!
5/15 Living life again!
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Re: Farewell to Tipna (www.tipna.org) party, Feb 4

Postby GregT » Fri Feb 01, 2013 4:25 pm

Hey, Lotta, Catherine and Karyn! Glad to "see" you all. I hope that some of you can make it for the 4th. Thanks to you for the kind comments above. I'm hoping we can all have a nice time on tipna before it ends. Many of the past PN websites have ended under bad terms for various reasons, but we've managed to stem the tide. I thought it would be nice to have one last time to all get together one more time. I'll see you then.

Greg
Had surgery in Nantes, France in 2001 with Professor Robert. Still have some contact with his program.
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Re: Farewell to Tipna (www.tipna.org) party, Feb 4

Postby Violet M » Sat Feb 02, 2013 5:35 am

Hey Greg,

I'm planning to check in on the 4th. Tipna was one of my lifelines during my darkest PNE days. Thanks for all you've done for the PNE community over the years.

Best,

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.
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Re: Farewell to Tipna (www.tipna.org) party, Feb 4

Postby donstore » Sat Feb 02, 2013 7:53 am

Thank you, Greg.
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
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Re: Farewell to Tipna (www.tipna.org) party, Feb 4

Postby helenlegs 11 » Wed Feb 06, 2013 11:00 am

Thanks from me too Greg. I wasn't able to be 'at' the party (sorry) but just had to say that people like you and places like TIPNA have been fundamentally instrumental in allowing this damned PN problem to become better recognised. You should be justly proud.
Cheers mate :) ,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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Re: Farewell to Tipna (www.tipna.org) party, Feb 4

Postby JODDY47 » Wed Jun 26, 2013 3:16 am

Thanks Greg!
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