Advice 10 months post op

Treatment options for UK & Irish members; including VHI & HSE criteria for funding and E112 Applications etc.
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Lex1
Posts: 23
Joined: Sun Feb 19, 2012 7:01 pm

Advice 10 months post op

Post by Lex1 »

Hi everyone

I am now 10 months post Pudendal decompression surgery and still struggling. The nerve was found to be crushed & stretched prior to release. I'm on 600mg Lyrica, 60 duloxetine, Zapain & PRN oral morphine. My walking distance has improved a little and my resting pain when lying has reduced, however I am still finding functioning difficult as the pain becomes unbearable if I stand, walk (slowly) or sit for to long. I cannot sit to work and driving is virtually impossible.
I have an outpatient app at the Walton centre in 2 weeks time with Dr Sharma who happens to specialise in neuromodulation. At this stage I have been ref for initial pain management help. I wonder wether anyone on here might have an opinion or experience to guide me now, specifically How long should I should give the post op passage of time before considering neuromodulation? Does anyone know any treatments that I might try in the interim?

Thanks

Lex
Struggling 37 year old male, Pain started Jan 2011
Unable to work since August 2011
Pudendal neuralgia diagnosed October 2011
Waiting 1st Of three CT guided injections!
Struggling more week by week
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Amanda
Posts: 450
Joined: Thu Sep 02, 2010 2:33 pm
Location: Dublin, Ireland
Contact:

Re: Advice 10 months post op

Post by Amanda »

Hi lex1

I'm not sure where you had decompression surgery, I have a huge experience with dr sharma in walton, if you would like to send me a pm please do so I have attended that centre for many years.
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
Lex1
Posts: 23
Joined: Sun Feb 19, 2012 7:01 pm

Re: Advice 10 months post op

Post by Lex1 »

Will do Amanda

Thanks
Struggling 37 year old male, Pain started Jan 2011
Unable to work since August 2011
Pudendal neuralgia diagnosed October 2011
Waiting 1st Of three CT guided injections!
Struggling more week by week
Positivepoppy
Posts: 174
Joined: Mon Feb 24, 2014 2:49 am
Location: uk

Re: Advice 10 months post op

Post by Positivepoppy »

Hi lex
Wondering how you are doing now are you 15 months post surgery? Did you have TG surgery with Mr Wong at frenchay Bristol. I had bilateral TG surgery there 3 months ago and recovery is a rocky ride plus not been offered any after care or plan for future recovery so not sure which way to turn? Last Nov 2013 Mr Greenslade did mention going to see a dr Carney after surgery but no word since? What is your experience and have you seen dr carney?
Really hope you are beginning to rid yourself of this awful pain, it sure is life changing!!!
Lex1
Posts: 23
Joined: Sun Feb 19, 2012 7:01 pm

Re: Advice 10 months post op

Post by Lex1 »

Hi Positivepoppy

I haven't been on the forum recently so apologies for the delay in replying to your msg. Now at 15 months post op I've had about a 20% improvement in pain. I don't regret having the surgery as I'm no longer house bound with it! I had trouble standing, walking & sitting preoperatively as things worsened. It has been a long, difficult time for me however both Dr Greenslade & Mr Wong warned me not to expect significant improvement for six months possibly continuing up to 24 months. It's early days for you so hang in there. Following surgery there really wasn't any follow up. I initiated referral on to see Dr Sharma at the Walton centre soon re spinal cord stimulation. Everyone's situation & recovery differs. Good luck
Struggling 37 year old male, Pain started Jan 2011
Unable to work since August 2011
Pudendal neuralgia diagnosed October 2011
Waiting 1st Of three CT guided injections!
Struggling more week by week
User avatar
Amanda
Posts: 450
Joined: Thu Sep 02, 2010 2:33 pm
Location: Dublin, Ireland
Contact:

Re: Advice 10 months post op

Post by Amanda »

Lex1
Sorry to hear that your surgery has not been a success, I have had a lot of experience with walton and Dr sharma so if you want to email me please do so. They are good At scs in walton.

I am in the UK currently so if you prefer to talk on the phone that's ok too.
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
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