We need to spread the word-we need help

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We need to spread the word-we need help

Postby jaxi123 » Mon Feb 23, 2015 11:50 pm

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

Postby Violet M » Tue Feb 24, 2015 4:47 am

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

Postby jaxi123 » Thu Feb 26, 2015 10:10 pm

Yes I contacted my congress woman and she said there was nothing she could do!
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Re: We need to spread the word-we need help

Postby Patty » Fri Feb 27, 2015 11:35 pm

We need someone famous to get this and who would be willing to go public.
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Re: We need to spread the word-we need help

Postby Aussie-m » Sun Mar 01, 2015 9:34 am

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

Postby ezer » Sun Mar 01, 2015 5:28 pm

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

Postby stephanies » Sun Mar 01, 2015 6:34 pm

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.
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