Pudendal Help Quarterly Mailing List Message

2008-11-07T11:51:09Z

Hello fellow sufferers,

We have some new information for you. First, we have received a letter from Dr. Bautrant, explaining some details of his surgical approach and the criteria used in diagnosing pudendal neuralgia. He is now using a doppler for intraoperative testing. You can find his letter as an attachment, in this mailing.

We also have some great news. There is going to be the First World Congress meeting about PN. It is being held in Aix en Provence on January 8th and 9th 2009. All of the largest pudendal neuralgia teams involved in diagnostic and the treatment of PNE will be there, to exchange experiences, thoughts and studies, and they will try to obtain guidelines for PN medical and surgical treatments. We will keep everyone updated about how the meeting went and if there is any new information about new treatments available for us PN'ers. You can obtain the program itinerary at http://www.alsmeeting.com. The program is written in French, but at the bottom of the page, you will see a British Flag. If you click on the British Flag, it will automatically change the itinerary into English.

We have also done some more updating on our website. You will now find, in the treatment options section, some videos that are relevant to PN. Some of the videos are about the craniosacral system, bleeding acupuncture and trigger point therapy. Since we are new to this, there are 2 or 3 videos that are not relevant, but we are working on trying to delete those. We will also try and update our videos every 2 weeks or so, so keep coming back to see what's new. Since this is new information, you may need to hit your "refresh" button, to be able to see the videos in this section.

Finally, as a chronic pain sufferer, it can be difficult, if not impossible for some of us to maintain employment. I have an Ebook that we purchased, which has over 200 job opportunities for virtual call center representatives. You can work at home, taking phone calls that are directed to your home phone. If you would like to have access to this Ebook, please send us a note to info@pudendalhelp.com, and we will send you out a copy of the Ebook free of charge.

We would also like to hear your thoughts about our website and if there is information that you feel is missing. Again, you can contact us at info@pudendalhelp.com. We look foward to hearing from you.

Thank you for subscribing.

Sincerely,
The Administrators of Pudendal Help

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Pudendal Help Quarterly Mailing List Message

2008-08-08T08:38:45Z

Hello Fellow Pn'ers!

Pudendal Neuralgia has always been considered a "rule out" diagnosis. There are many other illnesses that can have some of the same symptoms of pudendal neuralgia. We have always suggested to make sure to rule out any other issues, like Lyme's disease, infections, and other illnesses that can mimic some of the same symptoms of Pudendal Neuralgia. The PN experts have been getting together regularly, to see if they can come up with a way to correctly diagnose PN. They are trying to come up with the same protocol, so that every PN expert can conduct the same testing, in order to look at correctly diagnosing PN. Here is a relatively new article, from the "Nantes" team, that describes in good detail, what to look at when diagnosing PN. Here is the link: http://www.cofemer.fr/userfiles/algies-perineales-03.pdf

I also wanted to provide a feasibility study on the laproscopic PN decompression procedure. The transischio rectal approach and trans gluteal approach and trans perienial approach to PN decompression, has been widely studied. The only issues with all of these procedures is that they cannot reach the distal point of the Alcock's Canal. This study looks at the laproscopic procedure and shows some information, on how they might be able to reach this distal point. Here is the link: http://www.springerlink.com/content/41125r558537j588/

The last piece of new information that we have, is the new protocol, when making arrangements to go to Houston, for diagnostic testing and/or nerve blocks. Here is the updated information:

Dr. Renney is making a change to the program.

The new policy is this: if you arrive for your appointment with Dr. Renney and you do not have your required tests completed, all of your specialist appointments for that trip will be canceled.

Here is a reminder of the required tests:

1. MRI (without contrast) of the lumbosacral plexus, attention S2S3S4 nerve roots.
IMPORTANT NOTE: AN MRI of the lumbar spine is NOT the lumbosacral plexus attention S2S3S4 nerve roots.

2. CT of pelvis with contrast.

Unless Dr. Renney specifically tells you that the tests are not needed in your case, if you arrive at his office without these reports, all of your appointments for the visit will be canceled.

As fellow Pudendalites, we would hate to see you go down to Houston, for your appointment without the necessary medical records, spend money to get down there, just to find out, that your appointment has been cancelled.

We look foward to continuing to keep everyone updated on some of the newest studies and protocols!

Thank you,
Administrators of Pudendal Help

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