Surgery

[Ezzl]

Hi my friends from Australia n nz.

I'm booked in on 26 oct to have the tg approach done with prof Vancaillie n dr loffler. Getting nervousr n scared bout the surgery but also a feeling of hope that it will fix my entrapment once again.

I am booked i'n on 24 sep to have radio frequency of the illioungal nerve n a ketermine infusion for 10 days which I'm looking forward to having a decrease in pain

Erin

[HelenC]

Hi Erin,

Dr Loeffler performed my surgery in Feb this year and I have improved already. If not for Prof Vancaillie and Dr Loeffler, I would continue be in so much pain. I was nervous also, but you are in good hands. I wish you all the best.

Helen

[catherine a]

Erin, Stay positive. You've come so far with this pain. Surgery is improving all the time. Helen, it's so uplifting to hear your news. Makes our efforts in raising awareness and education of PN so worthwhile.

Where would we be without HOPE and the specialists who support us.

I was recently talking with Dr. Pavy here in Perth. (He is director of pain medicine at King Edward Mem. Hospital. Subiaco.) He has had a 2 year waiting list for his pelvic pain clinic. He was allowed only one day per month but is now allowed one day per fortnight. In the near future he will be allowed to have his clinics on a weekly basis thus cutting his waiting list down to 6 months. Things are definitely improving here in Australia. Still a long way to go though. Hopefully other hospitals around the country will hear our plea...... There are 3 of us here in Perth doing very well after having PNE release surgery. Hang in there Erin. It didn't happen first time around for you, but the TG approach just might be the one for you.

All the best to you both.

Catherine (WA)

[helenlegs 11]

Good luck Erin,
Know that everyone here is wishing you every best wish. I'm glad that things do seem to be coming on a pace where you are, although I does seem crazy that a 2 year waiting list can only be reduced slightly, as Catherine has reported. Progress ! but still a way to go. I'm sure the more positive surgical results the more likely the rest of the world has to take more notice.
Hoping you too will soon be able to give us positive surgical results Erin.
Take care,
Helen

[Sydneysufferer]

I, too, may need surgery here in Australia. I had my MRI done in Sydney and Dr. Vancaillie noted that there was entrapment and that surgery would be the only sure fix. The only symptoms I experienced were arousal - no pain so far.
I have not had the pudendal nerve block yet as I avoided sitting for so long that I got back to being symptom-free. I am now starting sitting again in order to see how my pudendal nerve goes and to hurry the process. I hear that the shorter the time between diagnosis and surgery, the better the result.
I am so afraid though. I hear about all these "re-do" surgeries that Hibner has done and fear that having the TG approach where they sever the ligament might lead me to need surgery again in the future. I pray so much that this is not the case.
I am only 26 and lead a very active life and want to become pregnant one day. My fear is that surgery may affect my ability to do those things.
I wonder if the people who have surgery and don't post on here have just had wildly successful results and have moved on with their life. I hope and pray there are tonnes of PNE folk who have been cured but never joined the forums.
It's good to have this website to go to and I wish everyone all the best with their journeys.

[Sydneysufferer]

Thank you so much for your input, Sunil. I found this most helpful.
I have been researching Michael Hibner as wonder whether anyone believes his procedure to be superior when it comes to preventing scar tissue and reinjury?
He seems to believe in his method and some of his patients on the forums praise his work. If money was not an issue, would most people employ his expertise?

[catherine a]

Hi Sydney, I don't like to recommend any one doctor over another as this type of surgery is fairly new. The few experts we have in this area are all well renowned surgeons and have taken a keen interest in researching this problem.

I'm from Perth WA and had no option but to travel to France to have decompression surgery. Bear in mind that NOT ALL sufferers will progress to surgery. Each and every patient is assessed individually and also their treatment plan will be tailored to the individual needs of each person.

I can vouch for myself and many other people that we have definitely improved from having PNE release surgery. We did not improve immediately, but rather had a very slow, painful recovery over a long period. The youngest being in her 20's seemed to recover quicker than I did. Each individual will recover differently. I also know of people who didn't recover at all.....many reasons would explain that...such as how badly the nerve is damaged, how long the nerve has been trapped. (7 years or more) Age and mobility of patient, other health issues, etc. etc. Some people give up hoping after they've had surgery, because they don't see any significant changes. I too, became so despondent and sad when at 12 months after surgery my pain was still intolerable. I never ever gave up hope that things would improve. I also did not ever consider doing surgery again as I often read about people recovering even after 3 years.

It wasn't until my 3rd year that I began to see great improvement. At 5 years I still feel I'm improving each year. This pain has to be judged on a yearly basis and not a monthly basis. It is very true, that the sooner this problem is diagnosed and appropriate treatment is given, the quicker the recovery. You are very fortunate to live in Sydney where the PN experts are working together in a multi-disciplanary clinic. Not only do they have Physio. Pain Management, Osteopathy, accupuncture etc. they work with a well known Orthapedic surgeon too. I don't believe there's anywhere else in Australia where this happens. If you've not responded to other treatments then perhaps surgery will help you. it's a difficult decision to make and I understand how that feels. It wasn't such a difficult decision for me as I had no quality of life, pain was intolerable and surgery gave me hope that things could improve.

I'm not here to promote surgery, I'd much rather see people get better without having to resort to this painful procedure, but after trying all other treatment modalities that didn't help perhaps our stories will help in your decision.
I don't regret doing it. Since your condition is at this stage 'arousal' and not pain, then the surgical procedure to release your nerve just might work out really well for you. Perhaps you might feel some nerve pain afterwards but there's a good chance it will settle down quickly.

The only downside of having surgery overseas is the fact that you still need ongoing pain management and phsyiotherapy when you return. The overseas surgeons will not keep in touch with you after you return to Australia.

Catherine

[Sydneysufferer]

Thank you so much for your reply, Catherine.

When I saw Dr. Vancaillie post-MRI he seemed to believe that TG surgery would be the only way to decompress my entrapment. On the MRI, the space between ligaments on the left side is so narrow that "the pudendal nerve cannot be clearly separated". On the right, the space is abnormally narrow but there isn't any definite entrapment there.

In the beginning I did PT with Sherin Jarvis. When I first saw Dr. Vancaillie, he thought it was plain PN and said we could try conservative treatments but after seeing my MRI, he retracted his initial statement and thought PT would not be the answer for me. I didn't think so either as I haven't got any issues with my PFM or surrounding structures and during PT Sherin seemed to think that things seemed quite normal. The only thing was when the side of the PN was pushed, it made my symptoms worse i.e rectal pain for days on end, just like after the internal exam when the nerve was palpated.

I hadn't sat for 6 months and my symptoms seemed to disappear. Vancaillie said this would be the case as I wasn't compressing the nerve but said as soon as I sat again, there would be no duobt that symptoms would re-emerge. He was right. Just three days into sitting for a short time each day and my arousals and urinary issues started again. I stopped sitting again as the last time I allowed them to progress I just about wanted to throw myself from the balcony!

The only thing I think makes the decision difficult is that darn SIJD/severing of the ST ligament issue. I am young and very active. Jogging, gym work etc doesn't have any effect on my symptoms. I would be very upset if I had to give up a ligament and my active lifestyle disappeared along with it. I also have a great desire to start a family one of these days but I am not sure the pelvis could take it if it was sans ST ligament...

Does anyone know whether perhaps weight has anything to do with the chances of developing further issues post-surgery? It would seem logical that the more weight you are carrying, the bigger the load on your pelvis. Surely the pelvis has so many ligaments that for SOME people, you could get away with cutting one as long as you weren't too overweight and so forth. It's just hard to know if I am one of those people or not. On paper, maybe I am but, as we know, in PNE land things can look straightforward but turn out completely different once the clinical process begins...

Sigh.

[catherine a]

Here is a copy of my surgery report. I too had the lower third of the sacro-spinous ligament severed. With lots of massage and physio. I came good. Massage is necessary to prevent piriformis syndrome.

TYPE OF SURGERY .. Surgical Treatment of right pudendal nerve entrapment at the Alcock canal and the inter-ligamental clamp by the trans ischio rectal approach with endoscopic control.

Indication- Right Pudendal neuralgia due to tight Alcock canal and inter ligamental clamp entrapment.

Medial and posterior colpotomy. Entry was through the right ischio-rectal fossea and dissectioned until reaching the sacro-spinous ligament.
Opening of the pudendal canal at the inferior edge of the sacro spinous ligament.
Liberation of the inter ligamental grip by sectioning very tight fibers of the lower part of the sacro-spinous ligament which constitutes the effect of a clamp with the sacro-tuberous ligament. This ligament was conserved and liberation was necessary by sectioning the lower third of the sacro-spinous ligament.
Entry in the Alcock canal was obtained by sectioning hard fibers of the Falciporous ligament.
Progressive section, after haemostasis with the ultrasound energy, of all the pathalogical and sclerosis fibers of the Alcock canal until there was total liberation.

Degree of entrapment at the Interligamental Grip: 4 (1-4)
Degree of entrapment at the Alcock Canal: 3 (1-4)

Careful haemostasis with bipolar energy.
Large antisepsis. Drainage. Closure with resobers stitches.

Duration of surgery : 1 hour and 15 minutes.

[janetm2]

There may be hope for overcoming the cutting of the SP ligament. I think I can say I am finally making traction on being stabile again 1 year 5 months post op. I have had PT, chiroptactic snd acupuncture and doing AB exercises and wearing an SI belt for driving and cooking (my two twisting activities). This is a big success since I am not athletic and never have been so the AB work is a challenge. I am not very overweight (5' 3" and 145 lbs) but notq on target weight either according to the medical charts. Not sure stillhow agressive a woorkout youwould be able to do as I still do not plan any real workout, just trying to keep my pelvis from going out of whack and flaring my nerve. Strebgtgening the ABs and other muscles to takeup the job of the ligament seems tobe the way to do without it. I am also past the idea of having children so i cannot help with that question and as you said we are none two alike so not sure you would have the same experience or result but I do think there is hope.