Why have we moved? Explanation

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Re: Why have we moved? Explanation

Postby Tiny Dancer » Mon Sep 20, 2010 8:02 pm

Greg is on the IC Network.

Kate
Had PN since childbirth 1968
Had MRI,MRN,EMG,trigger point injections,3 steriod nerve blocks, pelvic plexus CT
Seeing Dr. Hibner Sept.29,2010
MEDS: Cymbalta 120mg, Elavil 25mg, Valium Suppositories, Fentanyl patch
Surgery w/ Dr. Hibner 3/14/11
Pain did not go away until I was given a steriod block to broken coccyx
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Re: Why have we moved? Explanation

Postby GregT » Mon Sep 20, 2010 8:43 pm

So, Richard or his son was paid money to do something (transfer) and they just didn't do it? Not too surprising. When we set up pudendal.info originally, being an accountant (and thinking like one), I talked about how we'd have controls regarding our donations. Rather than having money just come in to one person without an up front accounting of how much we'd received, Richard didn't want anything like that. He just wanted money to flow in without any accounting of how much we received. I have no idea how this issue was handled after we set up tipna, but again, I'm not surprised that Richard let the issue of money cloud his better judgement.

Greg
Had surgery in Nantes, France in 2001 with Professor Robert. Still have some contact with his program.
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Re: Why have we moved? Explanation

Postby hilary » Mon Sep 20, 2010 9:46 pm

there is also www.pelvicpain.org.uk and Judy B the administrator would do a link or a message if one of the mods would contact her
I will post on the long running 'piriformis surgery anyone????' that is on one of the running forums.
Its only a matter of time before we are up the top of search engines again.
But the sadest thing is the lost knowledge and I despair that Richard (are you listening, Richard?) could do what he has done to a community that so badly needs all the help and support it can get. It isnt too late, it must be possible to copy across or simply allow access to a closed board.
Hilary
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Re: Why have we moved? Explanation

Postby catherine a » Mon Sep 20, 2010 11:49 pm

I have emailed Judy to ask her to link us on her website.

Catherine
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: Why have we moved? Explanation

Postby HerMajesty » Tue Sep 21, 2010 1:09 am

Maybe regarding the collective knowledge loss, we could make a sticky in the Welcome Center for "veterans" of the prior Board to do a relatively brief write-up of their history, treatments received, med regimens, and most valuable lessons learned in the process?
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.
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Re: Why have we moved? Explanation

Postby Violet M » Tue Sep 21, 2010 5:42 am

Greg, due to IRS regulations, we as directors are keeping very careful accounting of all expenditures and donations. This is a requirement when you are a non-profit corporation because you can be audited. Money can only be spent for charitable purposes and the way our bylaws are set up, no one person has control over everything.

Regarding the loss of information -- most of the really important information can be found in condensed form on the information pages of our website at pudendalhope.org. In some ways the old forum had so much information it was impossible to wade through it all. My guess is the old site will be back up soon but there may not be any moderators on it because every last one of us was booted off.

HM, I Iove your idea of everyone writing up their story and posting it . My 6 year surgery anniversary is coming up soon so I will write something up one of these days.
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: Why have we moved? Explanation

Postby KRISG » Tue Sep 21, 2010 10:29 am

Hi All,

And it would even be much better if we could make a personal story out if it on our website.
And even then violet , we could give anyone a read write right to his/her own story .--technical completely possible now !
That would really help I think as it avoids that information get cluttered .
I think that it would be good to let you together with the candidate publisher look at the whole story first to avoid that we do get allot of double information there .

What do you think ?

Kris
Bicyclist / IT guy / sitting allot
Then pain -- but only when sitting--
took me 3 years - nerve blocks etc to find out that it really was the surface of a chair that could help.. Now . After 5 years doing well -- on a special chair - special recumbent bike- special car - but ..almost without pain !!
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Re: Why have we moved? Explanation

Postby Kiki0203 » Tue Sep 21, 2010 9:40 pm

I'm very disappointed and angry the other site is offline....there was so much GOOD information for people on there...years of good posts....now all gone (unless it's decided to bring it back up). I am also angry because I had some messages saved in my inbox that were important AND I still had to reply to a few people...now I don't have their messages to refer to when responding. What a shame!!! :evil: But it is good that the site was able to relocate with different people in charge!!!
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Re: Why have we moved? Explanation

Postby Mod4 » Tue Sep 21, 2010 11:25 pm

Kiki

unfortunately the other site being offline is totally out of our hands, we are trying to see what we can organise to possible have posts restored so that members have their history to refer to in the future. We as Moderators and Directors have been working hard on this effort for a long time, we just ask that you bear with us and trust us to do our best to make some resolve.

Do you know who you were in touch with and want to send messages to? Maybe they will join here and then you can regain communication, many members have by now received an email alerting them to our move to www.pudendalhope.org so hopefully they will join up here and converse with you again.
We understand how frustrating this matter is for everyone, we are also upset and want our own information to refer to.

We have been as a team working on pudendal forums for many years and we are trying our best to get this site and forum up and running to the best of our abilitiy.
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Re: Why have we moved? Explanation

Postby LottaNerve » Fri Sep 24, 2010 9:33 am

Hi fellow PNE'ers,
I found you through TIPNA, after reading a post from Greg that suggested we come and check out our fellow Pelvic Pain site. I thought that was pretty neat, and as I posted in the Welcome section, I can use all the help and support I can get. Plus, helping others can make my day change from a self-centered pain-filled day to one with a warm glow. There is nothing like sharing with another human being who understands where you have been. I have been lifted from depression by finding some sense of purpose on these forums and building relationships with others who share this affliction.

Someone mentioned the ICN. I have been active on the forum (not so much now) but would be happy to post about pudendalhope in their Pudendal Neuralgia section.

I just had PNE surgery from Dr. Hibner in AZ on Aug 30, so I am in the hardest time of healing, or so I have been told. SO I will be back to read more and post more. Because I need you more than ever. I'm glad you are here!
I also recognize some names as people I have talked (written) to before, so "Hi" and I am glad to see you. :D
Yeay! PudendalHope!
Sharon
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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