PNA 2015 Patient Conference

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PNA 2015 Patient Conference

Postby Karyn » Tue Nov 11, 2014 3:21 pm

From the Pudendal Neuralgia Association:

Dear Members,

We are in the beginning stages of planning a Patient Conference. We would like to know how many of you will be seriously interested in attending so that we may have an idea of what type of venue and how many participants we need to plan for.

We are considering Friday, September 25, 2015 in Baltimore, Maryland. This will be an all day conference from 8:00 AM to 7:00 PM US Eastern Time including breaks, lunch and dinner. Some of the topics will be Overview of PN, Non-Surgical Treatments, Nerve Blocks and Ablations, MRN, Neuromodulation, Complementary Alternative Treatments, Physical Therapy, and Surgical Treatments.

Once we have an idea of how many patients are seriously interested in attending, we will continue planning to make this event worthy of your time an effort.

Please let me know if this is something that you will consider. I do not know what the cost will be but we are trying to keep the cost between $100-$150 with the possibility of offering a few partial or complete scholarships.

Your input is very important in our decision to move forward.

I would also like to invite you to visit our webpage especially the resources, events and social media sites. http://pudendalassociation.org/

Thank you for your time and consideration.

Wishing you health,
Dahri
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.
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Re: PNA 2015 Patient Conference

Postby nyt » Wed Nov 12, 2014 2:21 pm

Thank you so much for putting together something like this.

A discussion on the mechanism(s) of pain which would include where in the spinal cord and brain is pain perceived. What is central sensitization, how can it be prevented, once you have it how is it recognized and treatment options. How do the different medication works to decrease or stop pain.

How to manage constipation or if some have the opposite problem. Urinary urgency and hyperarousal.

Under alternatives what about the role of diet. I read an interesting book called "Minding My Mitochondria" by Dr. Wahls. She is a physician with MS that had progressed to secondary stage but reversed many of her problems with diet and functional medicine. She has some interesting information in her book how to decrease pain with the food we eat. She might be an interesting one to have to discuss diet if she could just focus on it from the pain perspective and not the MS side of things. I know some of the doctors that specialize in CRPS/RSD are asking their patients to try a gluten free diet for a while as some patients find it decreases their pain.

With all the discussion on the board about mind-body connection I think it would be of great interest to this group to have someone discuss the technique Ezer found so helpful.

Instead of regular seats we should have commodes :lol: .
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
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Re: PNA 2015 Patient Conference

Postby ezer » Wed Nov 12, 2014 6:17 pm

I agree nyt. There are 3 pelvic pain mindbody coaches I am aware of in the US:
Lorraine Faehndrich, Gail Kenny, and Abigail Steidley.

They all suffered from pelvic pain. I never met them but I found Abigail's ebook in particular enlightening --her ebook was key to my complete recovery from PN.
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: PNA 2015 Patient Conference

Postby nyt » Fri Nov 14, 2014 7:08 pm

Another subject might be toolkit for living with pain. Jill Harkavy-Friedman,PhD, American Foundation for Suicide Prevention recently gave a talk for individuals with RSD and addresses issue on depression, recognizing suicide, etc.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
nyt
 
Posts: 1154
Joined: Sun Oct 31, 2010 3:24 am

Re: PNA 2015 Patient Conference

Postby clm » Sun Dec 28, 2014 12:35 am

I would like to attend the conference as a post-PN-release surgery-2009 patient; re-injured 2010. Please add me to the attendee list. I am of course interested in all areas of chronic PN and SI joint pain-relief: imaging of and testing for damaged areas; surgical and non-surgical repair and maintenance; safe physical fitness, and anything that would help. Thank you. Clm
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Re: PNA 2015 Patient Conference

Postby Ray P. » Mon Dec 29, 2014 2:00 am

I wish I was able to travel to attend. I find it kind of ironic that you would expect people
with this condition to be able to travel and sit and stand all day for the conference.
I sure could not do it.

I guess some people are not in that bad of shape????????????????

ray
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Re: PNA 2015 Patient Conference

Postby Karyn » Mon Dec 29, 2014 2:43 pm

Hi Everyone,

I would like to clarify that I am not involved with organizing the conference. I just shared this information from the Pudendal Neuralgia Association.
If anyone is interested in attending, or has comments please direct them to:
http://www.pudendalassociation.org

Ray P. wrote: I find it kind of ironic that you would expect peoplewith this condition to be able to travel and sit and stand all day for the conference.

I agree. It is my understanding the Association is trying to work out something to accommodate patients so they are as comfortable as possible. I don't know what that
something is, yet.
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.
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Re: PNA 2015 Patient Conference

Postby nyt » Mon Dec 29, 2014 4:14 pm

Hi Ray,

That was my first thought was how could I ever do a full day conference, impossible. That is one of the reasons I did not attend last year, just too much in one day plus the travel. I figure if I try to attend this year that I will only attend part of the conference.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
nyt
 
Posts: 1154
Joined: Sun Oct 31, 2010 3:24 am

Re: PNA 2015 Patient Conference

Postby Violet M » Tue Dec 30, 2014 3:46 am

I think the conference was geared primarily toward healthcare professionals(especially physicians) since continuing medical education units were offered for physicians. If we all tell our physicians about the conference, maybe it will eventually grow to attract more physicians from all over the country and even internationally.

Violet
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: PNA 2015 Patient Conference

Postby nyt » Tue Dec 30, 2014 3:48 pm

Violet, I guess my confusion came when I went to the Pudendal Neuralgia Association website because when I read the "About Us/Contact Us" the goals are focused towards patients and not physicians. I did know the 2014 conference allowed physicians to get CME credits. Thanks for the clarification.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
nyt
 
Posts: 1154
Joined: Sun Oct 31, 2010 3:24 am

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