We need to spread the word-we need help

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jaxi123
Posts: 486
Joined: Thu Sep 30, 2010 12:35 am

We need to spread the word-we need help

Post by jaxi123 »

Who in our nations Capitol can we contact to complain about the lack of medical knowledge, lack of successful treatment, the difficulty involved ingest tin disability, etc????

We can send man to the moon but there is no pain relief for PNE. Makes no sense int 21st century.
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Violet M
Posts: 6598
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: We need to spread the word-we need help

Post by Violet M »

Your congress person maybe?
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.
jaxi123
Posts: 486
Joined: Thu Sep 30, 2010 12:35 am

Re: We need to spread the word-we need help

Post by jaxi123 »

Yes I contacted my congress woman and she said there was nothing she could do!
Patty
Posts: 158
Joined: Sun Feb 16, 2014 2:14 pm

Re: We need to spread the word-we need help

Post by Patty »

We need someone famous to get this and who would be willing to go public.
Aussie-m
Posts: 46
Joined: Tue Sep 28, 2010 7:27 am

Re: We need to spread the word-we need help

Post by Aussie-m »

Yes it would ideal to get someone famous to get the word out , I can't see it happening , So the next best thing is we live in a tec savvy world now , can some of you tec savvy people get the message out there that way ???? :idea:
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ezer
Posts: 689
Joined: Sun Sep 19, 2010 6:53 am

Re: We need to spread the word-we need help

Post by ezer »

Disability is a separate issue but regarding research, chronic pain is a very difficult problem in general. Be it back pain, neck pain, or pelvic pain. It is not that there is some conspiracy to let us suffer.
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
stephanies
Posts: 682
Joined: Mon Oct 25, 2010 3:07 am

Re: We need to spread the word-we need help

Post by stephanies »

I agree there is not a consipracy of any kind to let people suffer, I simply think many of us would simply like to see an increase in research (and research $$) put into chronic pain/neuropathic pain to help find more effective treatments.
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13. Pain reduced significantly beginning around 11/23.
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