Pudendal Nerve Decompression Surgery - post surgery recovery

[birdlife]

Hi rj, am so sorry your bipolar has been affected by continuous pain and tiredness, you don't need that on top of your physical pain. Have you been waiting long for your surgery, do they know your situation? Some docs don't take account of the tremendous stress long term pain causes, and need to be reminded. There are others on here who've had their darkest times pre-surgery, but they've eventually won through to a much better place. You cant win the race if you're not in it, hang on in there, please! Hugs for you,
take care,

[Violet M]

RJ, Dr. Ansell is very experienced so you are in good hands. I hope and pray all goes well for you. Do you have a surgery date yet?

Remember surgery is not a quick fix and it will take some time for recovery. Try to get a prescription for pain medication and use lots of ice.

Violet

[Jane]

I am post surgery 6+ years now, have been on this site and Tipna on and off all that time.
I have read these pages with interest and would like to wish anyone post surgery or contemplating surgery all the best.
I had bilateral PNe and finally got to see Prof. Carlstedt who separately operated TG right and then left at the Hospital for Neurology. He did say I was only the fourth person he had operated on and I feel sure that there have been enormous leaps forward in the understanding and procedures that are now being administered. One person on this post also went to the Hospital for Neurology but not under Prof Carlstedt. Would you let me know please if you are still seeing the Neurosurgeon/Neurologist or are being offered any other help from this hospital and what they are doing for you. Others mention physio - I had one meeting with a Physio, expecting some exercises etc and all she told me was how to reach for something/bend etc. I was quite surprised! Prof Carlstedt also discharged me after one follow-up. I was then under the Pain Management Team headed up by Dr Baranowski and saw him once a year but that too has finished and I feel I am left high and dry trying to manage my problems through trial and error. Can anyone let me know what they are experiencing helpwise if they still have a fair amount of pain post op.
It would appear that Dr Greenslade at Bristol is taking the lead in this field and I would be willing to travel if I thought I could get further help there.
I did not find the recovery from either side too bad, I have an 8" horizontal scar across each buttock and found Bio Oil helpful in reducing the scar tissue. The Prof did not give me a lot of information after the operations and I still have no idea whatsoever where the nerves were trapped/damaged and if they were successfully released if trapped or if damaged from the initial operation - will they very slowly repair? I had a Sacro Spinus Fixation instead of a Hysterectomy whereby the uterus is hitched to the Sacro Spinus Ligament and during the op the PN was caught in the stitch or damaged somehow. I was told that if the operation had been reversed within the first week I would have had a good chance of a full recovery but this did'nt happen. This is not a good operation gals. I went on to have a hysterectomy anyway.
I was on Pregabalin for two years and have to come off them because of side effects.
Some days are not too bad but others are not good, however I read posts of poor people who obviously suffer so much more that me.
Take care everyone

Jane

[molly]

Hi Jane,

I,m also from the UKand live in the west country.

I have had pn for nearly five years caused and compounded by a gynaecologist, thats a long story. I started off at London as I was unawarethere was an expert on my doorstep. I had a lot of procedures there and contemplated surgery with prof. C. but eventually decided against it at that point. I found the London team to be very impersonal and non caring.

I have been seeing Dr G. now for two years and I never feel so helpless after a visit he is a truely kind compassionate caring man.

I had surgery last year in Turkey, to date 11 months with about 30 sometimes 40% improvement.

I am still seeing Dr G. who had said should I relapse he would offer me a spinal implant. I have been seeing specialist p



hysio but she has become very expensive and Ifelt I was,nt progressing . I am noe seeing a massage therapist who has done some hip streches with great results, and am about to commence hydrotherapy after DR G. referral so at least Ifeel proactive, unlike the utter helplessnessbI felt under the london team.

So if you could get a referral to Dr G I definitely think it would be worth it.

[molly]

My pc is playing up that message was from Molly

[Jane]

Hi Molly,
Thank you for your reply and advice. I too have found the London team to be rather impersonal and uncaring and very quick to discard (that's how I feel anyway).
I am glad that you are getting support and help from Dr Greenslade. May I ask what type of Physio are you seeing. I have seen a couple but they were not able to help and I have not heard of hydrotherapy. I am seeing my GP soon and will ask him for a referral to Dr Greenslade, everyone says he is a very nice man. I don't mind travelling if I can get some real help and advice.
Take care

Jane

[Jane]

PS Molly, I meant to say Massage Therapist - sorry. J

[molly]

Hi Jane,

I think its good you are hoping to see Dr G. I think you,ll find he can at least offer you some options, as opposed to be left feeling there is no where else to go.

As regards the massage therapist, I don,t really know if he falls into any bracket. To be honest Ionly saw he to appease my daughter, he did come recommende to me via a colleague, a couple of years ago. He is ratherunorthodox and is an ex ballet dancer so has a very good knowegde of muscles. After assessing me he has been giving me different excersises, which he changes regularly if they either aggrevate or don,t do anything.

He openly admitted he knows nothing of this condition, so just uses his previous knowledge and has referred to literature at times. I think for me it was just a lucky strike. If you would find it helpful Icould ask him to e mail anyone you had in mind.


Regards Molly

[Jane]

Hi Molly,
Thank you for the information. I am at present waiting for the London to get back to me when I will ask them to either send me copies of my notes or a letter informing me of what exactly Prof C found. I have been to see my GP today and he looked at my notes and it just said that Prof C had removed some fibrous tissue from the PN. Which told us both nothing really.
My pain has subsided a little as I have not picked up my latest Grandaughter for a good 10 days. She is only 6 months and I just want to cuddle her. My other two are 2.5 and 1 year old and I know I cannot pick them up. I was told by a fellow sufferer ages ago that lifting is really bad for us. However saying all that I still would like to know what he found and I will need that information if I go and see Dr G.
I am so pleased you struck lucky with your massage man. I have no-one in mind at the present but thank you for the offer.
I wish you well.

Regards
Jane

[seanashton42]

I had my surgery yesterday. My history, is that after a bad fall onto my lower back (end of Nov 12)I went through a month of stomach problems a CT, MRI and Sigmoidoscopy before that turned into a blind alley. A Google search lead me down the PNE route and I found Dr Wong and Dr Greenslade in Bristol UK . The nerve block was a disaster. 6 weeks of considerable pain and discomfort before the recommendation to go straight for a RH decompression surgery. All seems to have gone well, I'm fully mobile; indeed I was pushing out press-ups this morning. However, the scorn from my wife will mean I won't be doing that for a while and I'm a little achy this afternoon.

Surgery was conducted privately, cost:£2600

Ill update my progress.