Pudendal Nerve Decompression Surgery - post surgery recovery

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adg1403
Posts: 24
Joined: Thu Jun 30, 2011 8:26 pm
Location: Bristol, United Kingdom

Re: Pudendal Nerve Decompression Surgery - post surgery reco

Post by adg1403 »

Thanks for your best wishes, much appreciated.

Not sure who the anaesthetist will be, hopefully will be Dr G, as his presence for other procedures I've had has been reassuring. But if not, I know the Frenchay team have a good reputation, and my limited conversations with Mr Wong so far all make me feel I'm in good hands.

Will report in as soon as I can. Like a lot of us who post on this site, the extent of my history could give Stonehenge a run for its money, but I'll say more when I'm in the post op phase, as it certainly appears I'm going to have the time to do so.

Hope to be speaking to you in the next few days, thanks again for your best wishes.

Andrew
Woke up one day in February 2004 wth PN symptoms - cause not known. Numerous drugs, epidurals and nerve blocks (incl CT guided) later, PNE diagnosed in early 2010. Decompression surgery (TG) undertaken at Frenchay Hospital, Bristol in October 2011. Currently under care of Dr Gareth Greenslade, Pain Consultant, Frenchay Hospital.
Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Pudendal Nerve Decompression Surgery - post surgery reco

Post by Lernica »

Keeping our fingers crossed for you, Andrew!
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
peaches
Posts: 53
Joined: Mon Sep 27, 2010 8:58 am
Location: West Yorkshire, UK

Re: Pudendal Nerve Decompression Surgery - post surgery reco

Post by peaches »

Hi Andrew

I know this good wishes message will have missed you as you will be having your surgery as we speak. But I just wanted to add my good wishes. I think you are very brave. I'd liketo go down the sergery route myself before I get much older (I'm 54 nearly), but currently am a carer for my elderly mother who had Alzhiemers and don't foresea me being able to do it yet.

Let us know how you get on and take things very very easy and slowly.

BTW - were abouts in the UK do you live?

Cheers
Peaches
PN diagnosed in 2009 by Dr Greenslade, Bristol
Symptoms for many years and numerous diagnostic tests
Currently controlled by meds - Venlafaxine and Lyrica
adg1403
Posts: 24
Joined: Thu Jun 30, 2011 8:26 pm
Location: Bristol, United Kingdom

Re: Pudendal Nerve Decompression Surgery - post surgery reco

Post by adg1403 »

Hello everyone

Have been back home for 24 hours after surgery on Wednesday. Surgery seems to have gone as planned, surgeon told me that the nerve was 'significantly' compressed, and also had to be released 'carefully' from the falciform ligament, which prolonged the surgery.

Anyway, the news is so far, so good. There is more nerve pain, which I was expecting, but having been sent home with medication no stronger than Ibuprofen, it's manageable and I'm just trying to rest now as much as I can. I am a lot more mobile than I thought I would be - can easily navigate the stairs, but trying to keep doing that to a minimum, and managed a 5 minute walk to my GP earlier today, although will no doubt pay for that tomorrow, as I'm doing a passable impression of 'Jake The Peg' at present! Did ask again if there were any recommended dos and dont's, but only advice I was given was to avoid lying on the scar for 'a prolonged period', which to me falls under the 'common sense' category. Have follow-up with Mr Wong in 4 to 6 weeks time.

Peaches - to answer your question, I am a fortunate beneficiary of geography - I live in Bristol, about 4 miles from Dr Greenslade's clinic at Frenchay, my GP referred me there as he used to work at Frenchay so knew about the pain clinic's work. Although I originally hail from your neck of the woods, I often make the joke that I'm here doing missionary work to spread the Yorkshire gospel!
Woke up one day in February 2004 wth PN symptoms - cause not known. Numerous drugs, epidurals and nerve blocks (incl CT guided) later, PNE diagnosed in early 2010. Decompression surgery (TG) undertaken at Frenchay Hospital, Bristol in October 2011. Currently under care of Dr Gareth Greenslade, Pain Consultant, Frenchay Hospital.
Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Pudendal Nerve Decompression Surgery - post surgery reco

Post by Lernica »

Good to hear from you, Andrew! I am surprised that you were not given any post-op instructions limiting your activities. Dr. Hibner's post-operative instructions are very strict (e.g. no bending from the waist, etc.). You might be able to find his guidelines by using the "search" button above, but failing that you can obtain them from Karyn who recently had the surgery. Remember that you do not want to overstress the nerve right now at its most vulnerable state post-surgery. It has already had a lot of trauma!

Good luck with the rest of your recovery and I hope it continues to be a smooth one. Please keep in touch!
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
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birdlife
Posts: 172
Joined: Mon Oct 11, 2010 1:56 am
Location: London, UK.

Re: Pudendal Nerve Decompression Surgery - post surgery reco

Post by birdlife »

Only Ibuprofen? Wow, how well are you doing already!! Excellent start, hope the rest of your progress is just as good Andrew. Many thanks for posting all your info and look forward to your eventual Success story :). Must have been fate that led you to live 5mins from the Frenchay hospitall!
Take care,
PN, possible entrapment at ischial spine -Dr.Natasha Curran, National Hospital for Neurology, London.
2 -Xray guided double nerve blocks -Dr.Baranowski - no relief.
TP self-massage reduced piriformis pressure on p nerve.
Dr.Greenslade/Bristol:
CT guided block (left) 16.7.12- success! Could sit without a cushion! On a brick wall!
06/2/13 - Sit pain gradually returned, L3. Offered further CT-guided block, or an op. Had to decline at time.
Feb '15. Applying to be referred again to Dr G.
calluna
Posts: 1058
Joined: Mon Sep 27, 2010 11:57 pm

Re: Pudendal Nerve Decompression Surgery - post surgery reco

Post by calluna »

Good to hear from you, Andrew! I was wondering how you were doing. I too thank you for posting to let us know.

I said before that I hoped it went even better for you than it did for me, and it sounds as if I was right! If you are managing with only ibuprofen right now - this is day 3 post-op for you - you are doing incredibly well.

Rest and heal - wishing you well.

PS - was Dr G your anaesthetist?
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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Pudendal Nerve Decompression Surgery - post surgery reco

Post by helenlegs 11 »

Good to hear your positive post and so soon after your op. Phew! I hope you improve all the way from here :)
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.
adg1403
Posts: 24
Joined: Thu Jun 30, 2011 8:26 pm
Location: Bristol, United Kingdom

Re: Pudendal Nerve Decompression Surgery - post surgery reco

Post by adg1403 »

Hi

So now a week post surgery, thought an update was due.

Still trying to get as much rest as possible, and not overdoing things - the gradual wearing off of the anaesthetic on the wound area is certainly helping me rest, especially over the last couple of days. Constant nerve pain still there, actually not too different to the pain levels I had before surgery. Managed another 5 minute walk to the GP today - doesn't seem to be taking too much out of me, but no similar excursions planned for a few more days!

Calluna - Dr G wasn't my anaesthetist, conversations I had with the anaesthetist were very brief as my surgery nearly got cancelled on the morning because of limited bed availability. Then suddenly at 1.30pm I was given surgical gown to change into and I was in theatre by 2pm. Given I'd been there since 7.30am and hadn't eaten since 9pm the previous evening, I don't have much recollection of what the anaesthetist said to me as I was feeling very light headed by that point and wasn't thinking very clearly! Anyway, enough of my war stories - how are you getting on?

Thanks for all the best wishes and encouragement, nice to have such positive support from those who truly understand, will keep me going during the journey to recovery.

Anddrew
Woke up one day in February 2004 wth PN symptoms - cause not known. Numerous drugs, epidurals and nerve blocks (incl CT guided) later, PNE diagnosed in early 2010. Decompression surgery (TG) undertaken at Frenchay Hospital, Bristol in October 2011. Currently under care of Dr Gareth Greenslade, Pain Consultant, Frenchay Hospital.
adg1403
Posts: 24
Joined: Thu Jun 30, 2011 8:26 pm
Location: Bristol, United Kingdom

Re: Pudendal Nerve Decompression Surgery - post surgery reco

Post by adg1403 »

Hi everyone

Thought I'd provide a progress report, given I'm now at 9 weeks post surgery and had my follow-up with my surgeon Mr Wong on Friday.

I'm recovering well from the surgery, if slowly. I'm getting more mobile each day, still can't really bend very much, and whilst I can get into a sitting position, it's still too painful to sustain. Mr Wong seemed comfortable with how things were going, particularly given how difficult the nerve was to release from the falciform ligament, and he reaffirmed that it could be at least six months before I start to get any improvement in the nerve pain I had pre-surgery.

One aspect I hadn't anticipated in our conversation was that I've had pain down the back of both legs since about the third week post surgery. I'd assumed (wrongly as it turned out) that this was an after effect of the surgery, and Mr Wong couldn't given an explanation for why I'm getting pain down the S1 and S2 nerves (I've never had sciatica before, but appears this is what I now have, albeit baths, showers and the ibuprofen seem to be stopping it from being too unbearable). So I thought I'd ask if anyone else has had similar pain post TG route surgery? Fair to say that I am a bit worried about this, I'm hoping it's a short term issue.

So my next steps - I'm back under the care of Dr Greenslade, and also to have a course of physiotherapy, as I've lost quite a bit of strength in my right leg - hopefully that will mean I'm OK to go back on the tennis court in the summer! We also had a conversation about medication - Mr Wong was a bit surprised that I wasn't on something like amitryptiline or gabapentin before going for surgery - I have taken these previously (2006 and 2007) in increasing doses, but found that (a) they offered no pain relief at all and (b) impacted on my cognitive ability to do my job, so at this point I really don't have any sense of confidence that reverting back to these will have much benefit, but no doubt that will be part of my first conversation with Dr Greenslade.

Still getting lots of rest, hopefully this will help with recovery, but having had PN since 2004, I realise it's a long game I'm playing.

Best wishes for Christmas and 2012,

Andrew
Woke up one day in February 2004 wth PN symptoms - cause not known. Numerous drugs, epidurals and nerve blocks (incl CT guided) later, PNE diagnosed in early 2010. Decompression surgery (TG) undertaken at Frenchay Hospital, Bristol in October 2011. Currently under care of Dr Gareth Greenslade, Pain Consultant, Frenchay Hospital.
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