Patient Handout

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Patient Handout

Postby Violet M » Sat Jun 23, 2012 7:14 pm

What would you like to see in a patient handout on pudendal neuralgia?

Please post your ideas here or send them to violet@pudendalhope.org. 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: Patient Handout

Postby Karyn » Sun Jun 24, 2012 2:03 pm

Hi Violet,
Just a few questions:
1. How many pages are the Directors thinking about for the handout?
2. Are you planning to include information that isn't already available on the site?
3. Is this something that would be available on the HOPE site for folks to download and print?

It would seem to me that the most valuable resource for a patient handout would be RESOURCES. Where to find help for diagnostics, surgeons, pain management, alternative treatments, etc ....
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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Re: Patient Handout

Postby Violet M » Sun Jun 24, 2012 9:53 pm

Sorry, I should have been more specific. We've been asked for a leaflet that doctors can hand out so I'm thinking one page folded into 3 sections with info on front and back. It would probably mostly be info that's on the website but it would be something providers could download and print to give to patients. We have such a long list of providers I think it would have to direct people to the website for that list. So I would like to hear from patients what info they feel is most important to include in a leaflet that gives a summary of PN.
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: Patient Handout

Postby helenlegs 11 » Mon Jun 25, 2012 7:23 pm

I suppose that if a patient is has been given a hand out they are on the way to PN treatment, so it's the wealth of information on this site and the HOPE community support and help that is important.
It's a shame that the wrongly diagnosed pelvic pain patients can't be given the leaflet. 'do you suffer from pelvic pain and nothing has helped?' or 'Had a diagnosis of IC and think it's nonsense?' That's not going to happen is it! being dished out to those they have misdiagnosed :)
Maybe it should have a bold(ish) hope logo but what H.O.P.E stands for in smaller text and Pelvic(nerve) Pain more prominent, even without the nerve, ? I haven't thought this through too well but the best we could hope for is to reach out to those who are floundering with a wrong/no diagnosis as well as those who have started on the right track.
I hope tons of people do have an input here :)
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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Re: Patient Handout

Postby Violet M » Mon Jun 25, 2012 11:36 pm

These are great ideas, Helen! Thanks. ;)
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: Patient Handout

Postby janetm2 » Tue Jun 26, 2012 1:42 am

Violet,
From what I see in the welcome center for people who first arrive it seems we say:
Go see a PN PT
get the diagnostic tests ( Potter or other 3T MRI or possibly MRN, nerve blocks, etc)
Stop sitting and whatever else causes you pain
get medication (Amitriptylene, gabapentin, Lyrica, Cymbalta, combo)
Maybe what they can give to their doctors for explanation to gain support
How to explain to friends, family, work
helpful hints such as grabber to pick up stuff, cuddling with young children you cannot pick up
Cushion info
Surgery alternatives like Dr Andrew ESWT...

note many things need to point to areas of the site but the top 5 of each?
Oh yes symptom list to give a clue to applicability.

Janet
2007-08 pelvic muscles spasms (per colon-rectal dr.) treated by ElectroGalvanicStimulis(EGS). 6/27/10 sat too long on a hard chair- spasms, EGS not work Botox help, spine pain dr 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 started/surgery at age 21. TG gave me back enough sitting to keep my job and join in some social activities. I wish the best to everyone!
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Re: Patient Handout

Postby Violet M » Tue Jun 26, 2012 2:11 am

Thanks Janet -- that's a very helpful summary/outline. ;)
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: Patient Handout

Postby nyt » Tue Jun 26, 2012 1:36 pm

Such wonderful ideas by everyone. When I think of handouts that I've gotten at dr.'s office I think Violet's idea of one page tri-folded is right on target. It could be divided into sections (my list below is not in any specific order):

1) What is Pudendal Neuralgia
2) How is PN treated
3) Typical medication options
4) Self-help
5) The role of pelvic floor PT
6) Who can diagnose and treat PN
7) Surgical Options
8) Life-style modications
9) Resources (this is where you could put website links ie here, spun, international pelvic pain society, american pain foundation etc.)

These handouts could even go to the dr.'s who treat PN to give to their patients as general info. Dr. Howard has an information sheet that is available on-line

http://www.urmc.rochester.edu/smd/Rad/Pudendal.pdf
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: Patient Handout

Postby Karyn » Tue Jun 26, 2012 2:11 pm

Thanks for posting Dr. Howards handout, NYT. Looks like it covers everything and is consistent with the info from this site. Maybe we just need to modify it a little bit to add the HOPE logo and add a link to this site.
Violet M wrote: We've been asked for a leaflet that doctors can hand out so I'm thinking one page folded into 3 sections with info on front and back.

Is it "PN" docs that have requested the leaflet? Specifically, what (specialty) doctors would be handing these out?
helenlegs 11 wrote:It's a shame that the wrongly diagnosed pelvic pain patients can't be given the leaflet. 'do you suffer from pelvic pain and nothing has helped?' or 'Had a diagnosis of IC and think it's nonsense?' That's not going to happen is it! being dished out to those they have misdiagnosed

I agree. I guess my concerns are: Would we be providing redundant information for patients who have already been to this site and/or are in the process of seeing a PN knowledgeable physician? Are we providing handouts to physicians who aren't PN(E) aware and don't treat it in any way?
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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Karyn
 
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Re: Patient Handout

Postby helenlegs 11 » Tue Jun 26, 2012 2:31 pm

I'm sure there will be patients who have been diagnosed with PN who have just been lucky enough to have a good Dr and know nothing about HOPE (got to be ??) If any of us see the leaflet (bound to be fabulous Violet) pick it up, develop a warm glow, then PUT IT BACK!! :D
I would love to see some pelvic pain leaflet in every doctors surgery, women's health clinic's, well man's clinic's as well as the specialised people. As impractical as that may be (would need government(s) backing for all I suppose)
What do others think would be doable and practical?
Love all suggestions as to content.
Are the questions
Content. . . . . . . alone?
Where to distribute ?
Any thing else?
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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