Health Organization for Pudendal Education

If you seek treatment with Dr. East at the oxford Clinic (Canterbury, Christchurch) he will more than likely refer you to Sydney IF he feels it's justified. Deborah Bush is at the same clinic. Most likely you'll have to be treated for quite a long time ie. maybe a year or more. I'm sure if things don't improve with time he'll consult Thierry..

Sneetch, you were probably given the information based on the fact that you called them yourself instead of your Specialist calling.. Prof. V told me he'll only take enquiries from other specialists.
Catherine

Hi PN buddies

I am pleased the Oxford Clinic are on board as I tried without success there after my PN surgery in Sydney. I am so pleased about this. The doctor I worked with there (unsuccessfully) had worked alongside Thierry in Sydney pre PN clinic days. He DID NOT want to know.

These other two doctors sound so promising for us all !
I am really happy to talk to anyone here in NZ, there was a lady who contacted me via email during the time I was moving out of Christchurch and I lost the contact details. I had an AWESOME physio in Christchurch, very in the know and interested

Please please have hope Kiwis, I am a success story, you just have to persevere and it WILL happen.

J

Hi Sneetch, Are you in christchurch yourself?

I am flying from Dunedin to Christchurch this Monday to get my 3T MRI at St Georges, my specialist in Dunedin (Dr Wayne Gillett) contacted Vancaillies team & they directed the radiologists in ChCh on how to do the correct procedure for Sacrum and Alcocks canal in the hope something can be diagnosed for me. At this stage I don't know what has been arranged, or what may happen.

I saw Oxford clinic (Dr Simon Jones) 2 years ago and travelled to their outpatient clinic in Ashburton, he said I had endometriosis, but after he did laporoscopy I had no endometriosis.
Last year I re-contacted the oxford clinic and tried to speak with Deb Bush, her nurse would not put me through, but passed on my inquiry.
She phoned me back and said that Deb Bush was unable to help me.

Hey Kia Kaha
Finally some headway for you !!! That is the BEST news that the doors are finally opening.Thinking of you Monday,

J

bindy15 wrote:Hey Kia Kaha
Finally some headway for you !!! That is the BEST news that the doors are finally opening.Thinking of you Monday,

J

THANKS!

yes it is FANTASTIC NEWS!

hopefully good news and a new direction follow on from the MRI!
Has to, as I'm so limited now.

Hey guys,

Kia Kaha - That's good news for you on the MRI! Good luck for tomorrow, I'm really interested to see how it goes.

No, I'm not in Christchurch, I'm in Auckland. I foresee a trip to Christchurch for me in the very near future though. I'm going to give Oxford Clinic a call first thing tomorrow morning and make an appointment with Dr Michael East. This weekend has been absolutely miserable for me. Saturday was spent with some of the worst vulval burning and stinging I've ever had. This morning the stinging and burning was gone but had been replaced with the most sickening clitoral sensitivity I've ever had ... It's been raging all day and so far is showing no signs of calming. I'm very worried that Oxford Clinic will be just another dead end. I hope this Doc is better than the last few. It seems like you can't even pay doctors to FAKE caring these days!

That's enough negativity I guess! There have got to be a few good, honest and caring doctors out there ... Right??

Recent update from Prof. Thierry Vancaillie,

Hi Catherine,


Here in Sydney, things do change continuously, that's what making it so exciting. Yes we have teamed up with Andreas Loefler, an orthopaedic surgeon to perform the pudendal nerve release surgeries. There are several advantages to that. First of all, Andreas is 'a built-in second opinion' prior to engaging in surgery. In that way we avoid overuse of surgery as a treatment modality.
We have also teamed up with Dr. Toos Sachinwalla, radiologist with a keen interest in pain. He has developed an MRI protocol which is second to none and most likely will be adopted by the French team of Professor Robert. So with regard to pudendal nerve entrapment, I think we now have a great team in place.
In addition, I introduced pulsed radiofrequency treatment of the pudendal nerve after visiting Dr. Van Buyten in Belgium. The technology originated in the Netherlands in the mid 90's and Dr. Van Buyten has the largest European centre performing this new technology. It consists in positioning a needle in parallel with the nerve and sending an electro-magnetic field toward the posterior horn, where the nerve connects to the spine. We started in May this year and have achieved at this point a 50% response rate. My target is to reach 70% by the end of the year.
We continue to use Neuro-stimulation (pain pacemaker implanted in the sacral spine) for the treatment of various pain symptoms. We seem to get good results in patients who have multiple site pathology (bladder + vagina + rectum). And of course Botulinum Toxin continues to feature prominently as well at trigger point injections and so on.
Now that we have our rooms in the City, we can perform several of these treatments in office as opposed to the hospital.


Thierry G. Vancaillie MD (Belgium)
Gynaecologist and Pain Medicine Specialist

This is such an encouraging, wonderful post Catherine. I am going to read it again it has given me such a warm glow .
Thanks for sharing this info.
Take care,
Helen

Hi Catherine
This update is just excellent, so great to read on the ongoing progress and refinement of techniques, if only the kiwi sufferers could have better access to someone with the faith and credibility of Prof V. Unfortunately there has been little progress here and I sooooo wish some medical personnel would take it on here !
I am a walking example of PNE surgery success, thanks to you ... and Prof of course

Jude
Full time teacher, fast walker, golfer and sitter !!!!!!!!!!!!!!!!!!

Yes Helen & Jude, it is so encouraging to see such progress here in Australia. We still have a long way to go in convincing other doctors though. It'll take years I suppose. Hopefully more and more NZ specialists will attend the seminars held in Sydney each year.

Jude, it's so encouraging to hear you're doing well. I too, have made great progress over the past few years. Keeping on the move definitely has it's benefits. At least we can do that now without suffering the dreadful burning and pain.
I recently made a long trip to Scotland & Ireland and although sometimes uncomfortable my pain stayed at a very low level. It didn't cause me any increase in pain level. Low, stable pain is still around but it's tolerable nowadays. If I focus on other things throughout the day, I barely notice the pain. A holiday is a great way to keep one's mind distracted. New things to do and see each day. Pity we can't be on holiday forever though.

One day we will surely cross paths Jude. Whether it be here in Oz or NZ. It will happen.