Health Organization for Pudendal Education

Hi everyone it's been a long time since I posted anything on here as I have been having a tough time of things generally!
Just wondering what follow up arrangements post decompression surgery people have experienced ?
I had surgery in January at Spire Bristol hospital and my follow up has consisted of emails with the surgeon. I feel pretty much abandoned otherwise. Looking at the forums I noticed someone had been referred for hydrotherapy and another mentioned ketamine injections at 6months if still in pain.
I am now 5 months in and have little improvement & my post op treatment is being repeatedly told to 'maintain a positive frame of mind' via the surgeon, which although well meant I'm sure doesn't help particularly. I don't appear to be under a pain consultant now and don't know how long to keep plodding along before considering my next treatment step.

I would be interested to hear other people's experiences

Regards

Lex1

Lex,
I am in the US and my surgeon was not much help post surgery except for providing a prescription for physical therapy after I said I thought that was the next step. He said yes I should do nerve glides there after 2 months post op. Since I was not ready for work he thought I may be disabled and sent me to pain rehabilitaion for eval. The did not think I was diasabled but were only helpful with medicine and paperwork so I got another gynecologist that knew about PN and PNE . He sent me to acupuncture and psychology and suggested meditation. I also started aqua therapy this year and I am 2 years post op and doing much better continuing with all the treatments. Maybe you need someone else besides the surgeon.
Janet

Hi Lex,


I am also in the UK and had surgery last year in Turkey.


I suppose I started to see a very small improvement at around six th eight months. I am now fourteen months post op and thanks to some physio of my hip muscles which has made a huge difference I can now get up to 50 % on some not all days.

I am still under the pain management team at Frenchay seeing Dr Greenslade.

I did request some hydrotherapy which was organised for me at Bath, but to be honest did,nt help that much so I just do my own thing at my local pool where the water thankfully is warm.

If you are not under Dr Greenslade this would be a good idea. I know his nhs appointments are very far ahead, so be prepared either to wait or think about going priveely.

To be honest I have had little or no input from my surgeon, as to be fair once they have operated thats their job done, so over to pain management until pain gets eadi

Sorry about that. I was going to say until pain gets easier.


Its a long hard road and you do have to be pr active in your management.


Hope this is helpful.


Regards Molly

Sorry I should have said the aquatherapy is for strengthening my core muscles to help overcome SIJD that came on after the surgery. Molly seems to have the UK info for you and my hubby said the same about the surgeon. Good luck.
Janet

Lex, I hadn't seen much improvement at 5 months either and was still on narcotics until 9 months post-op. If you can just get through a few more months before you draw any conclusions or do anything that might worsen your status that might be the way to go. In the meantime some pain management is a good idea. Maybe your GP will prescribe something for you if you can't get into a pain doc right away. Walking on level ground and swimming (except for the frog kick) are good exercises if you can tolerate them. I didn't start much walking until 5 months out and then I just started out at 5 min a day, slowly working up to longer periods of time. I guess I was a real wimp compared to some people around here but hey, it worked for me! After being through hell I wasn't about to undo what the surgeon had done!

Violet

Thanks everyone for your replies and advice. Maybe I'm expecting to much to soon. My GP has agreed to write to Dr Greenslade for advice. It's good to hear similar stories from people who can empathise with my position. The whole thing really gets me down watching life pass by!

Thanks again

Lex1

Hi Everyone, I am about to undergo the surgery route at Bristol. I have had this two years and diagnosed myself after six specialists couldn't figure it out. It has been diagnosed now and I am trying to get funding. Has anyone of you British got funding? I too want to know about after the operation. Did anyone have problems walking? Lex, I've not been there yet, but please try ans stay positive. Can anyone tell me about post operative care. What I do etc? Many thanks Shirley

Wish I could reference old posts because back in May 2011 Karyn posted Dr conways post-op info which had groups of weeks activities. I think there is another out there as well. Karyn's is under surgery. I think it would help if you can find it or maybe someone else can do the link reference.
Janet

Dear Lex

I wish you all the best with your recovery. Let's hope you experience some improvements soon. As I said to Andrea in my previous post, I follow the post-op stories with both curiosity and anxiety, as I am being put forward for the surgery route. More on that below.

Dear Shirely

Funding...the NHS.... I have plenty of experience and opinions. I have always maintained that the NHS must take responsibility for this condition. They have diagnosed it, so why not treat it? It is a condition that ruins people's lives. It is a serious and debilitating condition that drags a person's overall health, physical and mental, down and down and down. I consider my case of PNE to be an injury, it's just that it's an injury that has happened very slowly. If I'd run my car into a wall, they'd be treating me now. So where am I now?

I have stuck to my position that the NHS must respond to this condition, I have seen the surgeon in Bristol, and he proposed surgery. This was referred back to my GP who has to try to secure funding. Funding! For goodness sake! It's three and half years now, that's hardly VIP treatment and getting to the head of the queue. No, no. My case has to be an Individual Patient Treatment request and go before a panel. A panel! What is this a job application or something? I don't believe it is an especially expensive operation even. Now there are plenty of people who go jumping off cliffs in hang-gliders and crash down the cliffs (they crash continuously down my way), and have to be rescued by helicopters, taken to hospital, treated, repaired and so on. Do they have to go before a panel before they can get in the helicopter? Is there a panel waiting for them when they get to A & E?

Of course I’m just having a rant. No, I would not want our society to be one in which we don’t rescue people and leave them at the bottom cliffs for three and half years. But I hope I am succeeding in making my point. I would never expect to get treatment before anyone who was critically ill. There have always been long waits on waiting lists. But three and a half years waiting to get on a waiting list for an operation! We pay our taxes, so let’s keep pressing for treatment under the NHS. We’re entitled to it. My GP was upbeat on what he thought the ‘panel’s decision would be, and said I should not have to wait too long for a decision. We’ll see.

Comfortable sitting to all
P_M