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hello from a lurker

Posted: Thu Jun 09, 2011 1:42 am
by emily
Hi everyone,

My name is Emily, daughter of B__, who has been suffering from PN or PNE for 2 years. Mom was a very youthful and active 58 when stricken in 2009. Her pain quickly reached a 9 in any position, lasting all day, robbing her of the ability to focus on simple things like reading or watching a movie. Fortunately the pain is absent while she sleeps. Mom was diagnosed by Dr. Gordon in Toronto (thanks to this site we found his name and figured out what mom had). She had nerve blocks but no lasting results. She has tried many meds but only methadone cut her pain to a 4-6 on the pain scale, however it has recently stopped working and she is having to wean off of it. She is desperate to have surgery, and is looking to Dr. Robert in France as well as Houston. If anyone has a phone number or list of requirements for Dr. Robert it would be appreciated as we have applied with a letter but not heard back yet.

My siblings and have been gleaning much information here and wanted to say thank-you for sharing. This site truly does offer hope.

To be able to nurture her grandchildren is mom`s deepest wish; like everyone else here, she just wants her life back.

All the best to you all!

Emily

Re: hello from a lurker

Posted: Thu Jun 09, 2011 5:13 am
by mom
Oh Emily,
I am so sorry for what your mom is going through. What a wonderful daughter she has that you are taking the time to get familiar with and aid in finding her help.
I am sure that there is someone who can answer your questions, I wish had the info to the Dr's you requested. Best of luck!
My thoughts are with you all
MOM

Re: hello from a lurker

Posted: Sun Jun 12, 2011 3:56 am
by Violet M
Hello Emily,

You are such a wonderful daughter to be advocating for your mom.

You could try contacting Judy B at this website http://www.pelvicpain.org.uk/ for info on contacting Dr. Robert. Otherwise the only info I know of is posted on the forum here: http://www.pudendalhope.info/forum/view ... ?f=46&t=33

Best wishes for your mom.

Violet

Re: hello from a lurker

Posted: Sun Jun 12, 2011 4:05 am
by Lernica
Hi Emily,

Your mom is icing her perineum, right? This really helps with pain flares. Also, she has a proper pillow with a hole in the middle that allows her perineum to hang freely without being compressed? Please go to the home page for more info.

Next time your mom comes to Toronto please PM me and I would be happy to meet her.

You are very sweet to help her out with her condition. She is very lucky to have you by her side.