Fact Sheet Hand Out for Medical Professionals

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Fact Sheet Hand Out for Medical Professionals

Postby Violet M » Sun Feb 20, 2011 5:03 am

This is a one-page fact sheet on pudendal neuralgia, pudendal neuropathy, and pudendal nerve entrapment that you can print out to give to your health care provider. There is one on color letterhead or one on grey letterhead.



Last edited by Violet M on Tue Apr 15, 2014 4:27 am, edited 2 times in total.
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: Fact Sheet Hand Out for Medical Professionals

Postby nyt » Sun Feb 20, 2011 6:06 am

Thank you!
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: Fact Sheet Hand Out for Medical Professionals

Postby Karyn » Sun Feb 20, 2011 2:09 pm

Thank you! Thank you! :)
I especially appreciate you adding the line about warning patients of the potential risks of nerve blocks. Before I found this forum and because of the way these were decribed to me by the ordering Doc, I expected a full recovery after receiving them. I couldn't imagine what was wrong with me now, after suffering such a long, horrific pain flare!
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: Fact Sheet Hand Out for Medical Professionals

Postby AliPasha1 » Sun Feb 20, 2011 7:12 pm

Dear Karyn,
Welcome to the club!We should thank Dr. Quesada for his nerve blocks which is making so many of us worse.My case is very similar to yours.I had no sitting pain like youself before the PN blocks and developed it right after my bilateral Nerve blocks with Dr. Quesada.

I have numerous sessions of PT,Surgery with Dr. Bautrant more than a year but the sitting pain that I developed in 2007 after his bilateral Nerve blocks never went away. :cry:

Kind Regards,
Ali
Last edited by AliPasha1 on Mon Feb 21, 2011 12:33 am, edited 1 time in total.
Diagnosed for PNE by Dr. Jerome Weiss in June 2007.Started PT with Amy Stein in NYC.
PT for almost 3 years now without any results.
Pudendal Nerve blocks in August,2007 by Dr. Quesda left me with sitting pain.
Unilateral TIR approach with Dr. Bautrant on 18 Febuary,2010 with no major improvements and sitting is much worse.
MRI By Dr. Potter reveals nerve entrapment in the ST,AC and DN.
Dorsal Nerve Decompression surgery on April 8,2011
Redo surgery by Dr. Hibner on July 18,2011
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Re: Fact Sheet Hand Out for Medical Professionals

Postby Karyn » Sun Feb 20, 2011 7:21 pm

Hi Dear Ali,
The "sit bone" pain I developed after my second round of blocks is just the cherry on top of my cupcake. :) I always had excrutiating pain with sitting. Just not with the sit bones.
I wasn't even aware I had sit bones prior to the blocks. I do agree that people need to be aware that patients may experience long lasting adverse effects from the blocks, though, lasting from several days, to several weeks to months.
Warmest of 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.
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Location: Lowell, MA

Re: Fact Sheet Hand Out for Medical Professionals

Postby Violet M » Mon Feb 21, 2011 5:01 pm

Hi guys,

Glad you like the forum.

Could everyone please post comments about nerve blocks in a new thread so that we don't turn this thread into a nerve block thread? :lol: :lol: Thanks,

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: Fact Sheet Hand Out for Medical Professionals

Postby MsRivers » Thu Feb 24, 2011 9:40 pm

RE: Blocks (can be harmful and cause flares)

So what do you do when a PN doctor requires blocks as a diagnostic tool prior to surgery? I read Houston's requirements before they will consider surgery, and I believe Hibner requires blocks (up to 3) even though only the first block is used to make the diagnosis.
PN pain post laproscopic vaginal hysterectomy. MRN diagnosed me with piriformis, sciatica, and pudendal syndromes.
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Re: Fact Sheet Hand Out for Medical Professionals

Postby Celeste » Thu Feb 24, 2011 9:46 pm

The good news is, flares don't last. It's unfortunate that they happen, but for now the thinking is that it really is worth trying them to get relief to see if you can avoid any further treatment.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.

I am cured. I hope you will be, too.

There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.

http://www.tipna.org
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Re: Fact Sheet Hand Out for Medical Professionals

Postby Violet M » Sat Mar 05, 2011 11:17 pm

The fact sheets have been modified slightly to state that we are now a tax exempt organization. I replaced the old fact sheets in my original post at the beginning of this thread.
Last edited by Violet M on Mon Mar 07, 2011 5:14 am, edited 1 time in total.
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.
User avatar
Violet M
 
Posts: 5467
Joined: Mon Sep 06, 2010 6:04 am
Location: United States

Re: Fact Sheet Hand Out for Medical Professionals

Postby catherine a » Sun Mar 06, 2011 3:27 am

Thank you Violet, this is tremendous news.
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
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