Health Organization for Pudendal Education

Hi all, just had bilateral pudendal nerve decompression on 30 May 2014, so am 2 & half weeks out. I've left all my signature info for referance so in short instead of surgery approx 12 months ago I opted for lifestyle changes and medication. It took time but the pain slowly subsided to a point where life was reasonably good but i was attached to my cushion everywhere I went and couldnt sit for more than 1 hour at a time max and prob 2 hours max per day. So no restaurant meals with hubby and no trips to the movies. I had reached the best I was going to be which was ok but was hoping for more if possible. It was time to see if I could wean off some medication but within 2 days of just dropping 10mg of endep I was in massive pain. I was at the crossroads and Prof Vancaillie (Sydney) recommended surgery. The surgery went well but I was told it was very difficult and that I would never have recovered without it. Sorry I cant give specifics but all he said that it was genetic and that the pudendal nerve had very very little room to move. I am in no more pain than before the op and can sit, walk distances without any probs. I went home from hospital with strong pain relief as well as panadol but after one day, I dropped all tabs as I had next to no pain. I think my pain level is 1-2 at most but all my meds are still doing their job very well I imagine and that will be the final test over the next 12 months.I just had to say that the surgery itself was just about pain free. I'm doing my glide exercises every time I think of them and physio is booked at just over 4 weeks so that will be interesting. Strangely I did not get a post op Do's and Don'ts list so if anyone can fill me in I'd appreciate that. I've been a walking zombie with all my meds so cross fingers I can reduce in time. I just wanted to give my feedback about my operation experience as it was very good and I hope should anyone choose the surgery path, that they have the same ease with which I did. Kind thoughts to everyone

I am very excited to hear how well you are doing post-op and I hope that it continues. However, listen to you body and do not over do. If something bothers you do not do it and wait and try in a month or so.

Thanks nyt for advice. I note that you've already been down that track. How're you progressing? I think I'll follow that simple advice, I'm really looking forward to my physio apt to give me more info moving forward. I'm very pleased I took the surgery step after giving it my best with lifestyle and medication option. I just know that whatever the outcome, I've tried it all. I am of course crossing my fingers for 100%! - why not lol!!

That is wonderful that you are feeling so well! Can you tell me what your "glide" exercises are? I am 6 months post op.... A few restrictions that I was given post op...... No bending at the hip more than 90 degrees, no stairs, no physio for 8 weeks, no heavy lifting.... Limit sitting....if it causes pain then stop doing it! Please be careful and take it slow. Good luck and keep in touch. Water walking was helpful starting at 8 weeks.

Take care
Lara

Lara thankyou for that wonderful advice. I will use that to keep myself in check. Feeling good and doing the wrong thing would be awful. Gliding exercise I was told was either lying or even standing bring one leg up slowly to a 90 degree angle, hold one second and recline. Then do other leg. I don't know how many but I do about 10 or 20 each leg as many times as I think of it per day. That's about all I was told to do till I see physio at four week mark. They told me to rest as if I was at a resort relaxing lol! I tend to work better with more exact guidelines so thanks so much it's really appreciated, Judy

Hi Judy
I forgot one important thing.... When you start to do stairs Dr Hibner said to do "the good go up to Heaven and the bad go down".... Meaning take one step at a time and your bad side always goes down first when you are going down the stairs. If you are going up the stairs start with your good leg. Unless you are bilateral???? I only had my left side done so that worked well for me.

Take care.... Hugs

Lara

I'm bilateral Lara but your advice is just what I'm looking for. When you said "when you start doing stairs", I haven't a clue when I'm supposed to do that. It will be on my list of questions when I see my physio (who's fabulous by the way) and she will answer all of them and tell me what to do next I'm sure. I will have to ask her if perhaps between the surgeons and physio they could prepare an 'after op Do's and Don'ts' as I think that would be invaluable. I walk up and down my back steps at home quite a bit. There's about 7 steps so I suppose that's ok. I drove to my local shops yesterday on my cushion (I should sew it to my butt!) and did some shopping (with a trolley so no lifting) but I did overdo it a tad so with your tips I think I'm on the straight and steady now and will pay particular attention to what I'm doing. Thanks Lara for your advice and support, it's very much appreciated

Hi Judy,
If you enter postop protocoll in the search box in the top right of these pages you should get blightcp's post that has a link to Dr Conway's reccomendations of what to do at certain weeks postop. Best of luck recovering.
Janet

Hey Judy, fantastic news that you are doing so well! Did Dr. Vancaillie do your surgery or was it the orthopedic surgeon he works with? Please take it easy and allow yourself time to heal before getting too rambunctious.

Violet

Oh dear Violet, I just wrote a huge post and was interrupted by a phone call. When I resumed and completed my post it was lost as I had been timed out I hardly have the energy to repost and will give you more detail in the coming days when I calm down lol! I've got the 3 week post op blues, no progress but of course know that's not even rational thought so early in the recovery. A bit more nerve activity but to be expected I suppose. I'm taking a bag full of meds 300mg x 2 Lyrica, 60mg Cymbalta, 10mg Endep, .5mg Rivotril and am a bit of a zombie which was a major reason for opting for surgery. I couldn't reduce meds without enormous pain returning. Dr Andreas Loeffler was the Orthopaedic surgeon who performed the surgery with the presence of Prof Vancaillie. Dr Loeffler performs spinal surgery as well as hip replacement surgery which I think makes a perfect combination. Prof Vancaille told me post op that without PN surgery I had no hope of recovery. I had a genetic condition where the ligaments were far more fibrous and the PN had very little space to move on both sides. I see the physio in one more week and will move slow from there. Do you know Violet what the time range expectation for progress might be? I'm doing nerve glides as often as I can throughout the day. That and rest. Walking is difficult because of my past need to be on my feet and not sit with PN I've developed heel spurs and plantar fasciitis on both feet. What a shame as it gave me sanity and lifted my spirits when I could go for a walk but it's just another cross to bare. Here's hoping all will come in good time, cheers Judy