PLEASE SIGN THIS PETITION TO THE ASPN on PNE!!!

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A's Mommy
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Joined: Fri Sep 17, 2010 12:46 pm
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PLEASE SIGN THIS PETITION TO THE ASPN on PNE!!!

Post by A's Mommy »

Please sign this petition for the upcoming American Society for Peripheral Nerve meeting. Our goal is to get as many signatures as possible. Please do not "double sign." http://www.ipetitions.com/petition/brin ... apment-to/

THE UPCOMING MEETING OF THE AMERICAN SOCIETY FOR PERIPHERAL NERVE IS BEING HELD IN ONE WEEK. THE GOAL IS TO BRING AWARENESS AS MANY OF AMERICA'S PERIPHERAL NERVE SURGEONS WILL BE ATTENDING, ALONG WITH INTERNATIONAL SURGEONS. WE DO KNOW THAT DR. A. LEE DELLON, PROF. DR. OSKAR ASZMANN, AND DR. AARON FILLER WILL BE ATTENDING.

Thank you,

A's Mommy
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
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Violet M
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Re: PLEASE SIGN THIS PETITION TO THE ASPN on PNE!!!

Post by Violet M »

Here's a copy of the petition:

THE PETITION

To: Dr. Ivan Ducic, President, American Society for Peripheral Nerve, and fellow surgeons, residents, speakers, and members of the ASPN:

There are only a mere handful of surgeons in America who are offering surgical decompression of the pudendal nerve and its branches. Patients are being put through endless different tests and "protocol" such as EMG, Pudendal Motor Terminal Latency Test, unnecessary Botox injections, and sometimes dangerous drug trials that most often prolong the suffering of the patient. While the majority of surgeons would not accept 33% cured, 33% somewhat better, 33% no change, and 1% worse as surgical results, unfortunately, these are the grim statistics with most pudendal surgery outcomes. This is unacceptable.

The majority of patients suffer silently and terribly, with a poor quality of life because of the sexual, physical, financial, and social limitations that this disease entails. Additionally, patients are constantly burdened with the cost of flying all over the country and even the world to the limited number of specialists, and fighting insurance companies to pay for treatment.

We, the undersigned, desire that more attention be given, effective immediately, to one of the most important peripheral nerves in the body. American and peripheral nerve surgeons worldwide need to sense the urgency that pudendal nerve entrapment entails, and develop appropriate and timely diagnostic testing and surgical treatment for suffering patients.


I am wondering if it's too late to suggest some changes in the petition? I am very committed to raising awareness of PNE and I applaud your efforts. I feel that our cause will be better served if we make a more positive request that builds our relationship with the physicians.

Would it be possible to change it to something like this?


There are only a few surgeons around the world who offer surgical decompression of the pudendal nerve and its branches. We are very grateful for the work and dedication of the physicians who currently treat pudendal neuralgia.

There is no standard of care for patients with pudendal neuralgia and patients typically must undergo various tests such as EMG, pudendal nerve terminal motor latency test, Botox injections, pudendal nerve blocks, and trials of numerous drugs while waiting long periods of time to obtain appointments. The current success statistics of pudendal nerve decompression surgery are 33% cured, 33% somewhat better, 33% no change, and 1% worse.

The majority of patients suffer silently and terribly, with a poor quality of life because of the sexual, physical, financial, and social limitations that this disease entails. Additionally, patients are often burdened with the cost of flying around the world to the limited number of specialists, and struggling with the insurance companies to pay for treatments.

We, the undersigned, desire that more attention be given to one of the most important peripheral nerves in the body. We request that peripheral nerve surgeons worldwide sense the urgency that pudendal nerve entrapment entails, and develop appropriate and timely diagnostic testing and surgical treatment for suffering patients.
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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A's Mommy
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Re: PLEASE SIGN THIS PETITION TO THE ASPN on PNE!!!

Post by A's Mommy »

Sounds good, V.

I'll change it :-)

Thx
J
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: PLEASE SIGN THIS PETITION TO THE ASPN on PNE!!!

Post by janetm2 »

I am having trouble with the website from my nook but will try to gat on my regular computer to sign up. Also wanted to get this petetion back on the recently viewed posts so others see and sign up. Thanks
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
Emily B
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Joined: Sat Sep 18, 2010 1:21 am

Re: PLEASE SIGN THIS PETITION TO THE ASPN on PNE!!!

Post by Emily B »

I signed. Thanks for doing this.

Emily B.
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shawnmellis
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Re: PLEASE SIGN THIS PETITION TO THE ASPN on PNE!!!

Post by shawnmellis »

signed it. Fight PNE! Everybody please sign this.
Shawn
Bringing Help Awareness Education to Patients & Doctors about PNE through Videos at http://www.YouTube.com/PudendalNerve & PudendalHope.com Please tell Dr. Oz to cover topic of PNE by going to http://www.doctoroz.com/contact Started 1/2010. Initial urinary tract infection in 1/2010. Medication: Diazepam, Tramadol. 4 nerve blocks. physical reinjury 8/2010. 7/2011 Potter MRI Varices dorsal branch 8/23/11 Diagnosis Entrapment of Dorsal Branch Dr. Lee Dellon There's Always Hope!
donstore
Posts: 463
Joined: Mon Nov 08, 2010 6:13 am
Location: San Francisco

Re: PLEASE SIGN THIS PETITION TO THE ASPN on PNE!!!

Post by donstore »

Signed
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
peaches
Posts: 53
Joined: Mon Sep 27, 2010 8:58 am
Location: West Yorkshire, UK

Re: PLEASE SIGN THIS PETITION TO THE ASPN on PNE!!!

Post by peaches »

I have signed today
PN diagnosed in 2009 by Dr Greenslade, Bristol
Symptoms for many years and numerous diagnostic tests
Currently controlled by meds - Venlafaxine and Lyrica
deBBieW
Posts: 162
Joined: Tue Oct 25, 2011 2:59 am
Location: Milwaukee, Wis

Re: PLEASE SIGN THIS PETITION TO THE ASPN on PNE!!!

Post by deBBieW »

I have signed.

Debbie
Vag pain, leg burning 3/11, SIJ inj 7/11, Pelvic PT, Chiro/acupuncture,
2-CT pudendal blks 11/2012, did help, less deep vag pain
Potter MRI 04/2012 - Scar tissue/thickening at SS/ST, scar in Alcock canal -bilateral,
Hibner 6/12 suggests Botox (didnt do), 8/12 more pelvic PT w/ dry needling
Gabapentin 1800 mg, Lyrica 200 mg, 5mg valium, vicodin as needed
Trying to get rid of central sensitization burning pain in my legs, Valium seems to be helping
Looking into more mindfulness options. . . . .
DoubleEdgedSword
Posts: 201
Joined: Thu Oct 27, 2011 7:15 am
Location: Ontario, Canada

Re: PLEASE SIGN THIS PETITION TO THE ASPN on PNE!!!

Post by DoubleEdgedSword »

Signed.. Hope this will help raise awareness for those suffering in silence.. :)
On the road of discovery to see what is causing my PGAD.
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