Health Organization for Pudendal Education

I have read that Prof is now only seeing patients in New South Wales, Can anybody give any more info on this ?

If this is the case I am so grateful that I am well down the track with my PN. I would hate to be a NewZealander or a non NSW resident dealing with this beast now as services appear to be less rather than more than they were 5 years ago.

Why is this ? Is it because he is too busy because PN is now more commonly recognised ... or because of his previous surgeries he has closed down some of the treatments.

Oh dear me, if only we could get some actual Sydney stats one day ...

J

I would also like to know the ansewr to this question if anyone has happens to know.

Hope you are well Bindy , I think we have sploken or should I say typed in the past.
Im not sure if it was you or Stepahanie who had surgery through Southern Ccross. If it was you I just wondered if I could ask a couple of questions about it.

Regards,


Jacko

Hi Jacko
I have had surgery but not with any support from Southern Cross, although there may have been changes there. I know there was some announcement at some stage that surgery not available in NZ may have some cover. I believe Stephanie was with Aetna??? My expenses in Sydney were covered personally ( well by family really...)

I am doing extremely well, don't ever give up on this
Jude

Hi Bindy and Jacko,
Hope things are stable for both of you. I was insured with Sovereign and they were great.

Oops, just noticed that you're doing well, Jude! Terrific news.

Hi all
Haven't been on for a while, but just saw your post bindy15- is that true about Vancaillie? What a pity....hate to be starting this journey now in Perth and not be able to go!
I'm 3.5yrs post surgery and i'd say i'm about 60-70% better...but now starting to get fibro symptoms (my mum has it too). Just wondering how you are going and how (percentage wise) much you'd say you have improved. I really wish there were stats on how we all are going. (for everybody else bindy was no 7 and I was no 9 to get the decompression surgery from Vancaillie)
To everyone else- don't give up!
cheers Vanessa

Just spoke to Catherine a- who heard from Vancaillie himself today over this topic- the answer is he is no longer accepting self referrals Ie you have to be referred by a medical specialist so follow up can be organised if you are outside NSW.
Good news for those around Australia and New Zealand!
Vanessa

Thanks for clearing that up Venessa. Also does anyone know how accurate an Mri Scan would be with Dr Vancille. It seems alot of people on this forum are suggesting that Dr Hiollis Potter offers the best results so does that mean the other tests aren't somehow as good at diagnosing.

Also with regards to medical insurance, I have been told thast I need to get lettes from two experts within Nz before I can apply for any overseas treatment but if I knew any PNE experts in NZ I wouldnt be going eleswhere.

If anyone can shed any light on how to go about this situation I would really appreciate that.

Jacko

ness70 wrote:Just spoke to Catherine a- who heard from Vancaillie himself today over this topic- the answer is he is no longer accepting self referrals Ie you have to be referred by a medical specialist so follow up can be organised if you are outside NSW.
Good news for those around Australia and New Zealand!
Vanessa

great, my only hope gone.
I can't even get a med specialist in NZ to refer me for a NZ MRI to investigate this!
Let alone to get one to see Vancaillie.
I have got no medical insurance either.

My pain clinic doctor said he investigated vancaillie and said he was a charlotan, with less than credible results.
Rubbished him.

My gynecologist spoke to vancailllie in February, and i think based on that conversation i MIGHT be getting a pudendal nerve block here in Dunedin.
But don't know when/how or where that may lead.

SUX to be in New Zealand!!

Kia Kaha,

I can tell you now that Prof. Vancaillie is no charlotan. Your pain doctor should be ASHAMED of him or herself . It's unfortunate that these types of doctors don't want to learn anything new. From personal experience, Prof. Vancaillie has been the only doctor in the Southern Hemisphere to wholeheartedly take this issue on. He has unselfishly gone out of his way to help people who are suffering this horrendous pain. I don't see any other medical professional queuing up to help us the way he has done. They'll take your money then turn around and tell you that they can't help.

We are constantly being told that PN is the most frustrating condition to treat, for both the patient and the doctor. That is why most doctors turn us away. They didn't learn about this in Med. School and they don't want to learn about it now.
Where would be be without the selfless act of Prof. Vancaillie and doctors like him. If I were you I'd change my pain doctor. Find one who is willing to go to the conferences and learn what's going on with the pudendal nerve. I and many others on this site wouldn't be where we are today if we didn't have the treatments in Sydney. It makes me so angry to hear comments like this. Unfortunately, that's the way things are. Dr. Christian Barnard had to endure the same wrath from his fellow physicians when he performed the first heart transplant. Now the Pudendal nerve specialists are having to put up with the same.. The two Australian doctors who won the Nobel prize come to mind too. Dr. Barry Marshal and his colleague Dr. Robin Warren were ridiculed and called all sorts of fools when they researched the Helicobacter Pylori bacteria. The very same is now happening to the few PN doctors of this world. Keep on trying Kia Kaha. go and see Dr. Barbara Bush in Christchurch...She'll give you a referral I'm sure. I've seen her talk at the PN conferences in Sydney. She's the only hope for those of you in NZ. She's most interested in the research done by Prof. Vancaillie.

I too, was not given support by some doctors here in WA but I didn't ever give up hope that one day I would find a doctor who would show more interest and be willing to help people like us. I found him in Sydney...Where else can we turn to?? One day in the future, this will be taught in Med School. I suffered horribly 10/10 pain for 3 years before finding Prof. Vancaillie. Because of him I have my life back.