I look forward to seeing the final handout and may try to get it to my doctors that did not know about PN & PNE in hopes they can steer one person in the right direction until this condition is better known. I am not sure when I found this website but I think it was after I was told by my PT that she thought it was PNE. Any time along the way can help. Thanks for working on this Violet and the others for the great input.
Janet
Patient Handout
Re: Patient Handout
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.
Re: Patient Handout
An interventional radiology group contacted us asking for pamphlets -- a group I've not heard of before. They must have seen our website or something.Karyn wrote: Is it "PN" docs that have requested the leaflet? Specifically, what (specialty) doctors would be handing these out?... 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?
Dr. Howard's pamphlets was one of the first things I found online when I was searching for info. It was a wealth of information so I think something like that would be great. Maybe we could ask his permission to copy parts of it.
Right now, I would just like to hear whatever brainstorming ideas you all have and hopefully we can incorporate as many of these as possible. Maybe we could make the front page a little more general to pelvic pain to capture the attention of the reader but on the rest of the pamplet zero in on PN as one of the causes of pelvic pain and then provide education about that.
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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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Patient Handout
Yes Violet, good thinking. Must admit I haven't read Dr Howard's leaflet, but will .
Because nerve pain is so different from 'normal' pain, just listing some typical symptoms inside the leaflet will give anyone a good idea if PN may apply to them. Then they have the option to look at this website as a follow up, if they need more info.
I was going to add that it doesn't need to have too much information about PN inside (bullet points?), more as a direction to HOPE (home pages info and forum). But when people are suffering they don't loose interest when reading I guess, they need as much good information as they can get. I would also include some thing near the end if treatments are included (should be) to say that most people recover with conventional treatments, so as not to scare them too much
Some thing about us being here to help? to reduce any anxiety?
I know it will be great
Helen
Because nerve pain is so different from 'normal' pain, just listing some typical symptoms inside the leaflet will give anyone a good idea if PN may apply to them. Then they have the option to look at this website as a follow up, if they need more info.
I was going to add that it doesn't need to have too much information about PN inside (bullet points?), more as a direction to HOPE (home pages info and forum). But when people are suffering they don't loose interest when reading I guess, they need as much good information as they can get. I would also include some thing near the end if treatments are included (should be) to say that most people recover with conventional treatments, so as not to scare them too much
Some thing about us being here to help? to reduce any anxiety? I know it will be great
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.
Re: Patient Handout
Helen keeps speaking my thoughts..... 
....not complaining, think all the ideas presented so far are great.
I wish there was a way the patients whose doctors haven't heard of PN could get their hands on this info. I've been to a few area hospitals and would be happy to distribute wherever I could but know they would require approval from a patient info office first. Maybe recognition or support from a major player to endorse it so that the medical community would be receptive. The waiting rooms for MRI's etc would be perfect place to pick up a copy. I'd also drop some off to every doctor's office locally and see how many would offer them to patients.
My family doctor is the one who found the original HOPE website and printed me out volumes and volumes of pages asking me to read it over. It was a bit overwhelming but I zeroed in on symptoms and causes. Anatomy names isn't my strong suit so I suggest keeping the wording simple and easy to read. Tip of the iceberg approach. Darn, did Helen already say that too!
Maybe mention the latent effect of activities so people could connect their own dots which is pretty much what this journey is like. Empowering people to keep searching and be their own advocates and not to give up hope for effective treatments. Just finding this condition had a name was a huge winfall for me. Mentioning the various treatments seems important but also the fact that this would likely require travel..
Like Helen said
we don't want to scare but also it's important to know that it isn't an easy journey. Building a supportive network is key whether it be HOPE website, counselling, friends/families or educating their family doctors.
Thanks for taking this on, can't wait to see the results.
....not complaining, think all the ideas presented so far are great.I wish there was a way the patients whose doctors haven't heard of PN could get their hands on this info. I've been to a few area hospitals and would be happy to distribute wherever I could but know they would require approval from a patient info office first. Maybe recognition or support from a major player to endorse it so that the medical community would be receptive. The waiting rooms for MRI's etc would be perfect place to pick up a copy. I'd also drop some off to every doctor's office locally and see how many would offer them to patients.
My family doctor is the one who found the original HOPE website and printed me out volumes and volumes of pages asking me to read it over. It was a bit overwhelming but I zeroed in on symptoms and causes. Anatomy names isn't my strong suit so I suggest keeping the wording simple and easy to read. Tip of the iceberg approach. Darn, did Helen already say that too!
Maybe mention the latent effect of activities so people could connect their own dots which is pretty much what this journey is like. Empowering people to keep searching and be their own advocates and not to give up hope for effective treatments. Just finding this condition had a name was a huge winfall for me. Mentioning the various treatments seems important but also the fact that this would likely require travel..
Like Helen said
we don't want to scare but also it's important to know that it isn't an easy journey. Building a supportive network is key whether it be HOPE website, counselling, friends/families or educating their family doctors.Thanks for taking this on, can't wait to see the results.
Last edited by Skylar on Sun Mar 03, 2013 7:54 pm, edited 1 time in total.
Unilateral pain began in 2009 from fall trauma.
Re: Patient Handout
NYT, I was going to include the american pain foundation on the leaflet but just discovered they have ceased to exist. This is most unfortunate. 
http://www.painfoundation.org/
http://www.painfoundation.org/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.