Suggestions Please......!!!

Up and coming news about new ideas, new forums, and other suggestions that we plan to implement in the near future
florabunda
Posts: 11
Joined: Tue Sep 21, 2010 10:44 pm

Re: Suggestions Please......!!!

Post by florabunda »

Thanks for your support and understanding Karen but I have now found a welcome thread that is POSITIVE. I will eventually get the hang of things here and I think it is a great site. It is nice to "cheer up" now and again and we all need that. Off searching the threads to see what else is going on !
Tiny Dancer
Posts: 51
Joined: Fri Sep 17, 2010 5:28 pm
Location: Northern Virginia

Re: Suggestions Please......!!!

Post by Tiny Dancer »

I absolutely agree with everyone that the forum should be positive and up lifting for those in pain. But I do think that things like freezing threads is a bit like sensoring. Where are you going to draw the line? I guess the "who would do it" is the moderator.

I do think it's an excellent idea to have listing of different doctors and the patient's experience with that doctor listed under it. Keep on topic about that particular doctor. That way everyone can easily see the differences between doctors and then make up their minds as to what direction they want to go. If people had a certain place where their doctor is located and say, "had nerve block, had botox, had pt recommended, had trigger point injections, or had surgery and such and such happened. It would be a huge help.

Also, we need to have it easier to p.m. a person on the memberlist. As it is, you can't type the person's member name in and then send an e-mail. That is unless I'm a dope and don't know how to p.m.

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
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Suggestions Please......!!!

Post by HerMajesty »

I like Kris's idea of adding a rating & review section for each practitioner with, if technically possible, the ability to do a "star rating" system which is tabulated to form an average, kind of like hotels. I use rating sites like that often, like tripadvisor and greatschools. What usually happens is that most come out just about average, 3 stars out of 5 maybe, with some haters, some lovers, and some in between. but when you read the details of the reviews you get a good overall picture of what is a good match for you. And then there is the "red flag" where the overall rating is like 1 1/2 stars, and the "green light" when somebody has 5 stars or close to it...I think this would be a great way to browse, if it is easy enough to set up technically.
This seems much better than the alternative "debate" style of individuals within a thread arguing over a provider. If you see somebody you respect got one star, and disagree, don't argue or comment just give your own 5-star review.
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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Violet M
Posts: 6651
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: Suggestions Please......!!!

Post by Violet M »

Tiny Dancer wrote:Also, we need to have it easier to p.m. a person on the memberlist. As it is, you can't type the person's member name in and then send an e-mail. That is unless I'm a dope and don't know how to p.m.
After you click on members up on the right, you can click on the first letter of someone's name -- it's pretty easy to PM someone that way. I guess if we get several thousand members this would not be an ideal solution because there would be too many people whose name starts with the same letter but for now it's pretty easy.
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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KRISG
Posts: 370
Joined: Thu Sep 02, 2010 10:15 am
Location: Belgium
Contact:

Re: Suggestions Please......!!!

Post by KRISG »

Hi ,

Hereby a description(attached) of what should work

Hope it works too

PS: you could search on all kind of attibutes like age, member since , number of posts

Kris
Attachments
findMemberToPM.doc
(80 KiB) Downloaded 206 times
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 !!
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Suggestions Please......!!!

Post by HerMajesty »

OK here is a brand new idea not brought up yet...I am happy to say, locally here in the Las Vegas Valley, NV, I now have enough people interested (4 of us so far) to start a local, in-person pudendal neuralgia support group. Just have to juggle evryone's schedule, and we should be able to set up a 1st meeting. So, if anyone else who lives in a major metropolitan area, where it is realistic to get enough people to set up a support group, wants to get involved in creating one, can these be posted? Either as stickies in the Welcome Center or as a separate Support Groups category on the Board? I would love to be able to post prominently on this site that such a group exists, so that anybody from Southern Nevada who finds the Board will know they can contact me if they want to join. Also anyone from any area that wants to try to start one, could post as a contact person to see if they generate enough interest to make it happen. What do you think Mods? If you make the section or are willing to sticky my post, I will announce our group for starters.
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.
User avatar
KRISG
Posts: 370
Joined: Thu Sep 02, 2010 10:15 am
Location: Belgium
Contact:

Re: Suggestions Please......!!!

Post by KRISG »

Hi Hermajesty ,

What a nice idea ,
I would make a sepearte topic under the USA topic in the arround the world . Then you have your own private zone on this board ..
In this way we keep the simple setup now

like
Canada

USA

Europe

but we have then a subforum for you under the USA topic ...
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 !!
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Suggestions Please......!!!

Post by HerMajesty »

Kris,
My only concern is that it would be difficult to access for newcomers - like in my case, I am pretty sure that there are no other regular users of this forum in Nevada; probably no other registered users on the new board from Nevada period - but if somebody just pops up as a new person or an unregistered lurker, they are probably not going to find support groups as a subgroup in the USA section. I think such a subgroup would be better suited for the Welcome Center, if it is easier to put in a subgroup than a main heading.
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.
User avatar
Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Suggestions Please......!!!

Post by Karyn »

Hi Moderators,
I have a suggestion! :D Where "imaging" seems to be a hot topic these days, how about creating a 3T MRI Results and a separate MRN Results topic? Personally, I have posted my 3T MRI results in (2) different places(under 2 different topics). I was thinking that by creating separate topics, it would all be one, consolidated place for folks to refer to. It would be my hope that those who have had these tests done would initially only disclose the report findings and then leave them open to discussion.
Thank you for your consideration and most of all for providing this lifeline and opportunity.
Warm 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.
mod3
Posts: 2270
Joined: Tue Aug 31, 2010 4:18 pm

Re: Suggestions Please......!!!

Post by mod3 »

Under the welcome section of the forum I've created a forum for posting your local support group.

I also created an MRI/MRN forum under the "diagnosis and treatment" section. Within this forum I made 2 stickies where you can post your MRI or MRN results. I hope these are easy to locate -- let me know if you like the way it's organized.
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