Moderators;
Are we going to be able to view the posts from the other site? I know zilch about web behavior. I was wondering if this site will be able to take the info from the old site.
Once again, Thank-you all so much. I couldn't believe it, but even my husband was upset when I told him the other site was down. He's super glad that you all have taken the time and challenge to create this one. Violet, I love the picture. Maybe someday I can figure out how you do that.
My very best;
Doreen
Old info
Old info
Five pudendal nerve infiltrations with good results.
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
Re: Old info
Hi Doreen,
As Violet states in an other topic ,
We have the same type of access to the old side as you have ...none at the moment and we don't know what he decides to do with all the info- or even with our accounts..
If it comes back on maybe we can copy some things but ...I don"t know what will happen .
You see ...that was exactly the problem with it all along . The info and the name and then at last the organisation all together was taken hostage ...for his own personal agenda ... so upsetting , but this was honestly the best we could think off... believe me we tried it all ..
But thank you all to come to our new place and all your enthusiasm to make this place our new home .
Kris
As Violet states in an other topic ,
We have the same type of access to the old side as you have ...none at the moment and we don't know what he decides to do with all the info- or even with our accounts..
If it comes back on maybe we can copy some things but ...I don"t know what will happen .
You see ...that was exactly the problem with it all along . The info and the name and then at last the organisation all together was taken hostage ...for his own personal agenda ... so upsetting , but this was honestly the best we could think off... believe me we tried it all ..
But thank you all to come to our new place and all your enthusiasm to make this place our new home .
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 !!
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 !!
Re: Old info
Hi Kris;
Thanks for all that you do. Becasue I can't remember zilch, either age or meds causing it, in the past I printed out a lot of stuff. If you get the old stuff, fine, if not I'm sure as a group we'll put it together regardless of what the other owner does.
Thanks;
Doreen
Thanks for all that you do. Becasue I can't remember zilch, either age or meds causing it, in the past I printed out a lot of stuff. If you get the old stuff, fine, if not I'm sure as a group we'll put it together regardless of what the other owner does.
Thanks;
Doreen
Five pudendal nerve infiltrations with good results.
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
Re: Old info
Can anyone please provide me with the guys information that is holding all of the prior website info (www.pudendal.info). I have to see all of the surgical data on the website because I am a 25 yr old male and need to examine all of the data before considering surgery. An email, phone number, a name, or anything else would be appreciated. I would pay this guy just to see the data and am willing to do whatever it takes to get it. Please let me know how to get in contact with him.
Thanks
Thanks
Re: Old info
Don't pay him a dime. Any of us can help you; he doesn't own anything more than a lot of old, stale conversations. The medical journal articles are still out there and so are all of the professionals as well as the surgical veterans.abmia22 wrote:Can anyone please provide me with the guys information that is holding all of the prior website info (http://www.pudendal.info). I have to see all of the surgical data on the website because I am a 25 yr old male and need to examine all of the data before considering surgery. An email, phone number, a name, or anything else would be appreciated. I would pay this guy just to see the data and am willing to do whatever it takes to get it. Please let me know how to get in contact with him.
Thanks
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: Old info
Amen !
Everything that is in there is patient findings at the moment of writing , very much to read and undoable to draw conclusions on .
I think Richard would like to be paid for the info we all brought together . And maybe if you pay him allot , he will give you a backup ..
but I would not indeed pay him ..because I think it is not his info and there are much better ,faster and indeed cheaper ways to get info.
I would say ...what do you want to know ? Just ask !!
Kris
Everything that is in there is patient findings at the moment of writing , very much to read and undoable to draw conclusions on .
I think Richard would like to be paid for the info we all brought together . And maybe if you pay him allot , he will give you a backup ..
but I would not indeed pay him ..because I think it is not his info and there are much better ,faster and indeed cheaper ways to get info.
I would say ...what do you want to know ? Just ask !!
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 !!
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 !!
Re: Old info
It is too bad we lost some of the information but to be honest some of the older stuff was quite confusing. A few years ago, we had the "cure" of the month and everybody was rushing to get the ultimate new treatment (ART, cold laser, prolotherapy etc... etc...) or supplement. Very rarely did people come back to say that they were a bit overenthusiastic in their first assessment and eventually the new treatment or medication did not work as well as they had reported initially.
It is natural to want to believe in something when you are a chronic pain sufferer. I think the more measured and cautious posts we have now are much more helpful.
It is natural to want to believe in something when you are a chronic pain sufferer. I think the more measured and cautious posts we have now are much more helpful.
2002 PN pain started following a fall on a wet marble floor
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
Re: Old info
I agree. I prefer the new forum. A lot of information on the old forum was old and dated and no longer relevant for instance old contact information for treatment providers etc.ezer wrote:It is too bad we lost some of the information but to be honest some of the older stuff was quite confusing. A few years ago, we had the "cure" of the month and everybody was rushing to get the ultimate new treatment (ART, cold laser, prolotherapy etc... etc...) or supplement. Very rarely did people come back to say that they were a bit overenthusiastic in their first assessment and eventually the new treatment or medication did not work as well as they had reported initially.
It is natural to want to believe in something when you are a chronic pain sufferer. I think the more measured and cautious posts we have now are much more helpful.
Tried numerous medications as well as a long period of myofascial physical therapy combined with meditation/relaxation. My pelvic floor muscles are now normal and relaxed on exam ( confirmed by many Pelvic floor PTs) yet my pain remains the same. Also have intense leg pain. Deciding on next treatment.
Re: Old info
We have worked very hard to provide the up to date information for our members, the old forum lacked this greatly.
The older posts will and are being rebuilt, it just takes time for people to rebuild confidence in a new zone. The beauty of this Forum is that we have the support and membership of many veteran members who have a vast database of experiences Worldwide.
With everyones help we can make pudendalhope.org the place we as Moderators aimed for as the most up to date and informative place for PN people.
The older posts will and are being rebuilt, it just takes time for people to rebuild confidence in a new zone. The beauty of this Forum is that we have the support and membership of many veteran members who have a vast database of experiences Worldwide.
With everyones help we can make pudendalhope.org the place we as Moderators aimed for as the most up to date and informative place for PN people.
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
Re: Old info
I'm looking for the spreadsheet that was up for people that had surgery, who they went to, and if they were better, worse or the same after surgery; it also had the drs name. I would really appreciate it if someone could get this info to me. Send me a PM if you can.
Thanks
Thanks