Having PNE release surgery in 4 days

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
Post Reply
Sydney150
Posts: 13
Joined: Mon Apr 30, 2012 7:26 pm

Having PNE release surgery in 4 days

Post by Sydney150 »

Hi Everyone,
I have had PN since 2008. I am having PNE release surgery this week. I apply xylocaine ointment every 30 mins or I am in extreme pain. I'm Interested to know if there are other people with similar symptoms to mine, pain is primarily labia and some perineum.
I did a lot of dance, gymnastics and horse riding (a few falls) as a teenager, not sure how I got PN though. I have no children, am fairly slim and walk and do light gym - nothing that strains, avoiding lower body exercises lately to be kind to the PN!.
I had Pulsed Radiofrequency procedure 4 weeks ago, no improvement yet, and the added pain the procedure caused is just starting to lessen.
I'm experiencing financial problems from the cost of the xylocaine - costing me about $30 a day, I have spent a fortune on it over 5 years. I tried Lyrica and Cymbalta, both made me gain 4 kgs in 2 weeks and made me very sleepy and depressed so I did not continue with them. I had a pudendal MRI in March which showed a major entrapment on right pudendal nerve (no space or fat between nerve and ligaments) and partial on the left
Thanks :)
PN since March 2006. Chronic pain from when I wake up to when I go to sleep. Currently apply Xylocaine Ointment 5% (applied approx every 80 mins). See chiro once or twice a week.
Tried PN physio, Acupuncture, Cymbalta, Lyrica, Palexia, Topamax,Valium suppositories, Endep, Endep cream - can't tolerate them, quit after being drowsy, depressed, weight gain. Had PRF procedure July 2012, no improvement. Had TG PNE release surgery August 2012. L5-S1 spinal fusion and L5 nerve decompression Feb 2015
Top
User avatar
helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Having PNE release surgery in 4 days

Post by helenlegs 11 »

Welcome Sidney150,
What kind of perineal and labial pain do you have?. The pudendal well any problematic, nerve can send out such diverse pain signals from pure numbness (not really a pain I guess just a symptom) to flashing, burning deep ache and tingling (and a whole lot more) UGH!
I have perineal and labial pain, mainly itching and burning with the odd shooting, just lucky I suppose ;) , so can identify as I'm sure will MANY others here.
Who has treated you so far, and who will be doing your op? Good luck with that, please do let us know how you are getting along at some stage.
Is the op going to be bi-lateral? Well done with your progress this far, so many people find it extremely difficult to move forward as far as you have managed. It will be marvellous to hear that you have had no problems getting to this stage medically and diagnostically.
Just thought, did you try the cymbalta and lyrica separately at all to try and differentiate between the effects of the two drugs. Must say I couldn't get away with Lyrica either tho' I still take cymbalta.
Take care,
Helen
Last edited by helenlegs 11 on Mon Aug 27, 2012 7:02 pm, edited 1 time in total.
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Top
Sydney150
Posts: 13
Joined: Mon Apr 30, 2012 7:26 pm

Re: Having PNE release surgery in 4 days

Post by Sydney150 »

Hi Helen,
Thanks for your reply. Prof Vancailie is the surgeon and Dr Loefler is the Ortho surgeon also doing the surgery.
The pain is like burning, when the xylocaine runs out it is like 'raw/ dragging along the ground' type pain. Then I start to become irritated and my whole body hurts ...in a way.
I get some shooting pains too. I tried Lyrica just over a year ago for a few weeks and Cymbalta about 6 months ago, so separately. Yes, both sides are being treated.
I wish I didn't need to have this surgery, I can't afford the time off at all
Thanks again for replying
:)
PN since March 2006. Chronic pain from when I wake up to when I go to sleep. Currently apply Xylocaine Ointment 5% (applied approx every 80 mins). See chiro once or twice a week.
Tried PN physio, Acupuncture, Cymbalta, Lyrica, Palexia, Topamax,Valium suppositories, Endep, Endep cream - can't tolerate them, quit after being drowsy, depressed, weight gain. Had PRF procedure July 2012, no improvement. Had TG PNE release surgery August 2012. L5-S1 spinal fusion and L5 nerve decompression Feb 2015
Top
User avatar
helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Having PNE release surgery in 4 days

Post by helenlegs 11 »

Well done for managing to work through your problems too. That kind of positivity will be advantageous in your (hopefully rapid :) ) recovery.
There are a few people on this forum who have been under the care of Prof Vancaillie and I have seen a presentation by him on you tube (probably) He is a fantastic resource in your country.
I have had problems for the same amount of time to you actually mine also started in 08 (March, a fall! I remember it SO well)
Glad that you are getting the help you need :)
Take care, and obviously keep us up to date with your progress (think I said that already)
Did Prof V say how long you may need to be off work?
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Top
Sydney150
Posts: 13
Joined: Mon Apr 30, 2012 7:26 pm

Re: Having PNE release surgery in 4 days

Post by Sydney150 »

He said maybe about 6 weeks off work.
I'm not sure how positive I am ;)
Thanks Helen
PN since March 2006. Chronic pain from when I wake up to when I go to sleep. Currently apply Xylocaine Ointment 5% (applied approx every 80 mins). See chiro once or twice a week.
Tried PN physio, Acupuncture, Cymbalta, Lyrica, Palexia, Topamax,Valium suppositories, Endep, Endep cream - can't tolerate them, quit after being drowsy, depressed, weight gain. Had PRF procedure July 2012, no improvement. Had TG PNE release surgery August 2012. L5-S1 spinal fusion and L5 nerve decompression Feb 2015
Top
User avatar
Violet M
Posts: 6757
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:
Contact Violet M

Re: Having PNE release surgery in 4 days

Post by Violet M »

Hi Sydney,

You are in very good hands with Dr. Vancaillie and I wish you all the best with your surgery.

Have you tried using gel ice packs at all? They may help you to cut down on your xylocaine use.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Top
Sydney150
Posts: 13
Joined: Mon Apr 30, 2012 7:26 pm

Re: Having PNE release surgery in 4 days

Post by Sydney150 »

I tried Pluscaine anesthetic gel yesterday and it has given me a major flare, been crying a lot, fever and major pins and needles pain when I woke up.
The Pluscaine was too strong.
Violet, I took on your advice and the ice is helping, I don't use it enough, Thanks :)
PN since March 2006. Chronic pain from when I wake up to when I go to sleep. Currently apply Xylocaine Ointment 5% (applied approx every 80 mins). See chiro once or twice a week.
Tried PN physio, Acupuncture, Cymbalta, Lyrica, Palexia, Topamax,Valium suppositories, Endep, Endep cream - can't tolerate them, quit after being drowsy, depressed, weight gain. Had PRF procedure July 2012, no improvement. Had TG PNE release surgery August 2012. L5-S1 spinal fusion and L5 nerve decompression Feb 2015
Top
Jackson
Posts: 90
Joined: Wed Oct 12, 2011 1:58 pm

Re: Having PNE release surgery in 4 days

Post by Jackson »

Sydney150 wrote:Hi Helen,
Thanks for your reply. Prof Vancailie is the surgeon and Dr Loefler is the Ortho surgeon also doing the surgery.
The pain is like burning, when the xylocaine runs out it is like 'raw/ dragging along the ground' type pain. Then I start to become irritated and my whole body hurts ...in a way.
I get some shooting pains too. I tried Lyrica just over a year ago for a few weeks and Cymbalta about 6 months ago, so separately. Yes, both sides are being treated.
I wish I didn't need to have this surgery, I can't afford the time off at all
Thanks again for replying
:)
Hi,
I wish you all the best for your surgery. As someone who has visited Prof. Vancaille I'd be very interested to know how you go. PWH I presume tomorrow (31 August). I'll be thinking of you.

When you feel up to it would you please make a post again so we all hear how you're going.

Cheers Jackson.
Top
Sydney150
Posts: 13
Joined: Mon Apr 30, 2012 7:26 pm

Re: Having PNE release surgery in 4 days

Post by Sydney150 »

Yes, Friday the 31st,
I'll let you know how I am doing
Thanks :)
PN since March 2006. Chronic pain from when I wake up to when I go to sleep. Currently apply Xylocaine Ointment 5% (applied approx every 80 mins). See chiro once or twice a week.
Tried PN physio, Acupuncture, Cymbalta, Lyrica, Palexia, Topamax,Valium suppositories, Endep, Endep cream - can't tolerate them, quit after being drowsy, depressed, weight gain. Had PRF procedure July 2012, no improvement. Had TG PNE release surgery August 2012. L5-S1 spinal fusion and L5 nerve decompression Feb 2015
Top
Ezzl
Posts: 64
Joined: Fri Sep 24, 2010 6:53 am

Re: Having PNE release surgery in 4 days

Post by Ezzl »

Hi Helen,

My names Erin and I too see Prof Vancalli.

I am seeing dr loffler on Monday to talk about the surgery. I am entrapped on the right side and need surgery.

3 years ago I had the TIR approach which failed so I'm interested to see how you go.

Do you mind pm me the approx cost of the surgery if you don't mind so I'm prepared for the shock of the cost.

Erin
Top
Post Reply

Return to “WELCOME CENTER”