Hello,
Thankfully I've stumbled across this site after over a 15yrs of debilitating pain and isolation. I attended a pain management clinic 12yrs ago after complaining of a terribly pain radiating from my dorsal nerve. I was given neurontin, endep, and opiate pain relief. As time has progressed my pain has become intermittent in it's levels (ranging from 1 to 6) but never any permanent relief. I have in this time raised my 17yo son on my own and now that he is getting closer to independence I would really like the opportunity to focus on what I can achieve for myself in the future.
Could anyone shed some light on a way forward for me, does Prof Thierry Vancaillie see male clients ?
Any input would be so much appreciated.
Kind regards...Andrew
A little lost
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catherine a
- Posts: 291
- Joined: Sat Sep 18, 2010 4:46 am
- Location: Perth Western Australia
Re: A little lost
Andrew, Prof. Vancaillie does see male patients at Prince of Wales hospital in Randwick. Are you living in NSW? You may want to consider seeing him. He works with physiotherapist Sherin Jarvis also treats males with good results. You'd need to get in touch with the hospital and ask to be put through to Prof. Vancaillie's pelvic pain clinic.
You may also want to get in touch with Sunil (he' s from Canberra) and regularly posts here. He travels to Brisbane to have specialist physio. treatment with Peter Dornan with positive results.
Welcome to HOPE and I do hope you get this resolved soon. You've suffered so long. Now that your son has grown you can focus on a way forward for yourself. We're here to support and offer help to one another so don't hesitate to keep in touch. There are some people I've met persoanlly who did end up being cured from physiotherapy and relaxation techniques. It did take a few years but they've now moved on with their lives and don't want to be reminded of the painful years they had with this condition.
Sadly they don't feel the need to post on this forum any more. It would be nice to hear from people who are doing well though. Don't give up hope Andrew. Things can and will improve in time. Australia has very few health professionals who are willing to look outside the square to help people like us. Prof. Vancaillie is the leader in his field when it comes to PN. Let us know how you get on.
You may also want to get in touch with Sunil (he' s from Canberra) and regularly posts here. He travels to Brisbane to have specialist physio. treatment with Peter Dornan with positive results.
Welcome to HOPE and I do hope you get this resolved soon. You've suffered so long. Now that your son has grown you can focus on a way forward for yourself. We're here to support and offer help to one another so don't hesitate to keep in touch. There are some people I've met persoanlly who did end up being cured from physiotherapy and relaxation techniques. It did take a few years but they've now moved on with their lives and don't want to be reminded of the painful years they had with this condition.
Sadly they don't feel the need to post on this forum any more. It would be nice to hear from people who are doing well though. Don't give up hope Andrew. Things can and will improve in time. Australia has very few health professionals who are willing to look outside the square to help people like us. Prof. Vancaillie is the leader in his field when it comes to PN. Let us know how you get on.
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.
Re: A little lost
Hi Catherine a,
Thank you so much for taking time to reply, and for your positive words....it means more to me than I can convey.
Yes I do live in N.S.W, I'm on the far north coast but will gladly fly down if the Prof. Vancaillie and Sherin Jarvis are willing to see me.
I have forwarded and email to the clinic but I will also phone first thing on Monday morning to get the ball rolling. I will also keep an eye out for Sunil (he sounds very proactive) and hopefully have a good chat with him.
Once again thankyou so much for taking the time to reply Catherine..I promise I will keep you informed of my progress.
If there's ever anything I can do to repay your kindness please don't hesitate to ask.
Andrew
Thank you so much for taking time to reply, and for your positive words....it means more to me than I can convey.
Yes I do live in N.S.W, I'm on the far north coast but will gladly fly down if the Prof. Vancaillie and Sherin Jarvis are willing to see me.
I have forwarded and email to the clinic but I will also phone first thing on Monday morning to get the ball rolling. I will also keep an eye out for Sunil (he sounds very proactive) and hopefully have a good chat with him.
Once again thankyou so much for taking the time to reply Catherine..I promise I will keep you informed of my progress.
If there's ever anything I can do to repay your kindness please don't hesitate to ask.
Andrew
Re: A little lost
Hello Sunil,
Thank You for taking the time to reply and for the link regarding Peter Dornan. Any help in the right direction is so valuable and so very much appreciated. I will make a phone call this week and see what he says, I'm only 3hrs drive from Brisbane which works out great (as I can stay overnight with a friend).
The cost is really great and having access to an MRI that can check for nerve damage is amazing.
I've noticed you have made many valuable contributions to this site and I hope you are finding some success with all your efforts...Once again thanks heaps.
Thank You for taking the time to reply and for the link regarding Peter Dornan. Any help in the right direction is so valuable and so very much appreciated. I will make a phone call this week and see what he says, I'm only 3hrs drive from Brisbane which works out great (as I can stay overnight with a friend).
The cost is really great and having access to an MRI that can check for nerve damage is amazing.
I've noticed you have made many valuable contributions to this site and I hope you are finding some success with all your efforts...Once again thanks heaps.
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: A little lost
Hi Andrew,
Thank goodness you now have this information and will be able to act on it. I hope that things work out for you and your problems can be sorted out. Hopefully conservative treatment will work wonders.
All the best,
Helen
Thank goodness you now have this information and will be able to act on it. I hope that things work out for you and your problems can be sorted out. Hopefully conservative treatment will work wonders.
All the best,
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: A little lost
Hi Helen,
The understanding and support I have received since joining this site already gives me reason to be optimistic.
I find this situation to be so personal and isolating, but I guess i can say that freely here without worrying whether people actually understand.
At the risk of sounding like a broken record, can I just say thank you for taking time out of your day to get in touch.
Hope things are going well for you over there.
Andrew
The understanding and support I have received since joining this site already gives me reason to be optimistic.
I find this situation to be so personal and isolating, but I guess i can say that freely here without worrying whether people actually understand.
At the risk of sounding like a broken record, can I just say thank you for taking time out of your day to get in touch.
Hope things are going well for you over there.
Andrew