Health Organization for Pudendal Education

I had TIG with Prof V, is he not doing this anymore ??? I can't figure out what is going on ??

Last I had spoken with him, he has moved to the ROBERT approach because the TIR results did not seem to be very good. You might have been one in a minority of 'successes'.

He has never surveyed his patients or followed up on surgery ... I am not sledging Prof Vancaillie...he saved me completely...but he has always been so busy that follow up has been zero.. And there is a considerable group down under who would like to speak up and celebrate the surgery we were lucky enough to have.

Please believe that TIR/surgery was successful for several

J

I am going to email Prof. Vancaillie now. I can also testify that TIR approach has helped me tremendously. It's taken 4 years to recover to almost 100% .
There are some in Australia who did not achieve good results. There are many reasons for this, age, length of time the nerve has been trapped ie 10, 15, 20 years. Other illnesses etc. There are 3 of us here in WA who have had great results with the TIR surgery.

I will post Prof. V's answer asap.

Below is an email message from Prof. Vancaillie:

Hi Catherine,

Thank you for your e-mail. Sorry to hear I have caused controversy, but that's probably not the first time in my life.
Let me explain what is happening at our Pudendal Nerve Diagnosis and Treatment Centre at WHRIA.

The main themes are:
1] we have made significant progress with non-surgical treatment
2] the results of the surgery are good, but often below the patient's expectations
3] pudendal nerve entrapment is rarely a stand-alone condition

A study on the 'natural history of pudendal nerve block' which we recently finished (a manuscript has been submitted for publication last month) shows that there is substantial improvement in at least 40% of the patients. And that is after a single injection of anaesthetic alone. This has convinced me to continue improving the injection technique first and then to look into using different substances to improve the outcome.

Improvement in injection technique was aimed at making sure the injected medication is actually delivered into Alcock's canal and the infra-piriformis canal. We achieved that by introducing dynamic fluoroscopy: radio-opaque dye is used to localise Alcock canal and we observe how the dye as well as the anaesthetic spreads along both canals toward the perineum as well as toward the sacrum. Patients who received blocks prior to introduction of that technique and are now getting a repeat block with dynamic fluoroscopy, report a marked difference in result.

Parallell to this development, we have started working with Dr. Toos Sachinwalla from Northside Imaging and have developed a specific pudendal neuralgia protocol for MRI (neuro-MRI). We have now realised that combining the MRI and the neurography (=dynamic fluoroscopy) technology gives us a far better understanding of the anatomy. We can now see the true dimensions of Alcock canal and abnormalities such as compression by the falciform ligament, narrow canal etc. We also believe (but can't prove yet) that we can actually visualise true compression of the pudendal nerve along its course. The most common site for compression, at least identified by this new combination of techniques, appears to be between the sacro-spinous and sacro-tuberous ligaments. We have however also observed that the anatomy is not 'fixed' over time. We are able in some cases to 'unblock' a compression, using large volumes of injected fluid in combination with cortisone.

Our team has also increased to include: 1] Sherin Jarvis, physiotherapist, who you already know; 2] Bernice Lowe, acupuncturist specialising in pain management (Bernice spent several weeks in the US and Canada to learn new techniques specifically aimed at dealing with chronic pain); 3] Amy Corcoran, osteopath, who deals with frequently associated pathology such as unstable sacro-iliac joint; 4] Kate O'Flynn, naturopath, who deals with the frequently associated gastro-intestinal issues; and 6] Margaret O'Brien, psychologist, who provides instruction in coping techniques.

Last year we introduced neuro-stimulation for the treatment of various conditions involving the sacral plexus. We favour this approach if there is additional issues, for instance with urinary or fecal incontinence. Associated pathology is the rule rather than the exception unfortunately.

In summary, we have a 'holistic' approach to the patient and exhaust all conservative measures prior to recommending surgery. The majority of patients do well with conservative management. Surgery does not eliminate the need for additional measures in most patients and patients need to be aware of that prior to committing to surgery. We offer both the trans perineal and trans gluteal (with Dr. Andreas Loefler, orthopaedic surgeon) approach, depending on anatomic findings. Dr. Loefler, Sherin Jarvis and myself spent a week in Nantes this year to learn the trans-gluteal approach from the master himself.

And unfortunately I am not going to Las Vegas, but I will be in Nimes next year.

I hope I answered your question,

Regards

Thierry







Thierry Vancaillie MD (Belgium), FRANZCOG, FFPMANZCA
Gynaecologist and Pain Specialist
Conjoint Professor, UNSW
Director, Women's Health and Research Institute of Australia

Hi Catherine
Thanks so much for posting this, I have read through Prof's response several times. If only we were followed up. I am so pleased I was lucky enough to have been one of his first patients where pudendal block, botox and surgery were the sequence of events. I feel disheartened for those who could have been as lucky as me. I do wonder how many surgeries have been done ...

J

Hi Guys,

Just a update on what has happened since 2011.

I had a Nerve block at Randwick Private Hospital in May 2013 with Pro T Vancallie - My MRI shows no nerve compression and the nerve block on LHS did not make my pain any better. What it did do was confirm the diagnosis of the MRI that i do not have a Pudendal Nerve compression, which i think is a good thing.

I have said no to any medications such as ENDEP AND CYMBALTA, and had three very good sessions with Sherin Jarvis, she was very good and understanding. My issues are related to the PFM and i need to relax these everyday via internal trigger point release, also do stretches everyday. I also need to work on my bowel movement as straining just puts more stress on the PFM.

Also i need to start exercising in the swimming pool which was recommended by Sherin. I finally realise the stress i have been putting on my PFM and to get it back to a relaxed state will take time...i have lost alot because of this pain but i'm trying to be postive and hoping the physio will help.

In my 7 years with this condition i have found no doctors or Physios who understand this condition, however Prof V and his team are the best.

Amit

Amit,

Good luck with physio. I hope you will continue to see improvements. From everything I've heard, you are in good hands with Prof. Vancaillie and Sherin.

Best,

Violet

catherine a wrote:Below is an email message from Prof. Vancaillie:

Hi Catherine,
A study on the 'natural history of pudendal nerve block' which we recently finished (a manuscript has been submitted for publication last month) shows that there is substantial improvement in at least 40% of the patients. And that is after a single injection of anaesthetic alone. This has convinced me to continue improving the injection technique first and then to look into using different substances to improve the outcome.

Improvement in injection technique was aimed at making sure the injected medication is actually delivered into Alcock's canal and the infra-piriformis canal.

Regards
Thierry
Thierry Vancaillie

Hi, This is a quote from the email to Catherine from Prof. Vancaille. I'm not sure if I'm reading this correctly. I don't quite understand how one injection of just anaesthetic is improving 40% of patients? Anyone able to shed some light on this. Is this a common outcome?
Cheers

Jackson wrote: I don't quite understand how one injection of just anaesthetic is improving 40% of patients? Anyone able to shed some light on this. Is this a common outcome?
Cheers

Not very common with people who post on the forum, unfortunately.

Violet