My limited but painful experiences of medical personnel have led me to a simple conclusion: people recommend and carry out stuff they are trained to do - and which they earn a living from. A surgeon will tend to recommend surgery, a physio will find weak/ tense muscles etc.I'm not even saying they have an ulterior motive-perhaps they just have an understandable tendency to support what they have spent years learning to help people.
I think there is also a tendency on the patient's part to have procedures that his/her insurance will pay for - perhaps because the procedures are difficult to have done on the NHS. Is your surgeon going to recommend physiotherapy or your physio going to recommend surgery? Just my 2 pence worth.
surgery
Re: surgery
"if you want to keep a secret you must also hide it from yourself" Orwell
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: surgery
Hi Andrea,
Your head must be swimming
Everyone can offer advice and their own experiences ( and should ) They may help your decision but in the end that decision is yours alone.
If I was in your situation I would try to think about exactly how I would feel if surgery was cancelled, as in , not ever going to happen.
Would you feel as if it was an opportunity wasted, or feel relieved?
I wouldn't dwell too much on the private health insurance money making idea with the Bristol team, but again that is just my own personal opinion. I'm not saying that this sort of thing doesn't happen (it does!) but I don't see it happening here I have to say.
Can you have another chat with Dr Greenslade? and put any questions about the surgery to him?
I have been 'refused' surgery at Bristol, although I am NHS of course, so dissimilar (they don't do cluneal and post femoral cutaneous decompression) but I'm fairly sure that other private patients have gone to Nantes, as Bristol don't (yet?) do any other pelvic nerve decompression other than the pudendal nerve and their problem was pudendal plus another pelvic nerve. I realise that this isn't the same thing that has been talked about so far, but to me it does demonstrate that they are not just doing pelvic surgeries just for renumeration. I also know that Dr Greensalde chooses a surgeon who would be the most appropriate for the individual task and Mr Dixon is an excellent surgeon. (he didn't send me to Mr Dixon for instance)
Really sorry to hear that you are having personal difficulties, especially at a time when you need support. This is such a difficult problem to deal with, from both sides in a relationship but at least you are actively trying to solve the PN problem which in turn should help both of you eventually.
Whatever you choose to do I wish you the very very best.
Take care,
Helen
Your head must be swimming
Everyone can offer advice and their own experiences ( and should ) They may help your decision but in the end that decision is yours alone.
If I was in your situation I would try to think about exactly how I would feel if surgery was cancelled, as in , not ever going to happen.
Would you feel as if it was an opportunity wasted, or feel relieved?
I wouldn't dwell too much on the private health insurance money making idea with the Bristol team, but again that is just my own personal opinion. I'm not saying that this sort of thing doesn't happen (it does!) but I don't see it happening here I have to say.
Can you have another chat with Dr Greenslade? and put any questions about the surgery to him?
I have been 'refused' surgery at Bristol, although I am NHS of course, so dissimilar (they don't do cluneal and post femoral cutaneous decompression) but I'm fairly sure that other private patients have gone to Nantes, as Bristol don't (yet?) do any other pelvic nerve decompression other than the pudendal nerve and their problem was pudendal plus another pelvic nerve. I realise that this isn't the same thing that has been talked about so far, but to me it does demonstrate that they are not just doing pelvic surgeries just for renumeration. I also know that Dr Greensalde chooses a surgeon who would be the most appropriate for the individual task and Mr Dixon is an excellent surgeon. (he didn't send me to Mr Dixon for instance)
Really sorry to hear that you are having personal difficulties, especially at a time when you need support. This is such a difficult problem to deal with, from both sides in a relationship but at least you are actively trying to solve the PN problem which in turn should help both of you eventually.
Whatever you choose to do I wish you the very very best.
Take care,
Helen
Last edited by helenlegs 11 on Sat Jun 01, 2013 9:58 am, 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.
Re: surgery
Hi Andrea, good advice from Helen, it has to be your choice. I disagree though not to consider this issue of a consultant recommending sgy just for the money. I think it goes on far more than you think and needs to be debated more on here. Nhs is closely monitored. Private treatment isn't.
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: surgery
I have been in that same situation Lenny, some years ago when to me it was just, 'Oh great! here we have some more jobs for the boys'.
I'd had a scan which showed nothing much wrong spinally but was offered a nerve root block, as I was in BUPA back then it was just SO easy to arrange, Kerching
I was then offered a spinal fusion, Kerching! but thankfully I did refuse it as I knew there was nothing wrong with my spine.
Still they got a fair wad of cash out of it but I SO wish I was still in BUPA (it was through work and I don't work now) It would be best if there was something in between as I have found the NHS very difficult to negotiate, although my GP has been rather unhelpful which hasn't helped.
Probably the best scenario is to be a private patient without simply accepting everything that is said; weighing up options and making a considered decision based on a good understanding of the problem and any procedures offered.
In the case of PN, generally the NHS is totally out of it's depth anyway, unless you do manage to get to see someone who does recognise the problem, as indeed the Bristol team do.
Otherwise I could get my Tarot cards out
Andrea please let us know what you are thinking and how you are. If the idea of surgery is causing you major angst, maybe go for the stim? as it is another option open to you. Could you be transferred to NHS for that if BUPA won't pay?)
I know another guy who has had a stimulator that has worked well for over a year but is now exploring the surgical option. (Baranowski and hoping to go to Bristol,) at least thankfully you are already there.
Take care all,
Helen
I'd had a scan which showed nothing much wrong spinally but was offered a nerve root block, as I was in BUPA back then it was just SO easy to arrange, Kerching
I was then offered a spinal fusion, Kerching! but thankfully I did refuse it as I knew there was nothing wrong with my spine.Still they got a fair wad of cash out of it but I SO wish I was still in BUPA (it was through work and I don't work now) It would be best if there was something in between as I have found the NHS very difficult to negotiate, although my GP has been rather unhelpful which hasn't helped.
Probably the best scenario is to be a private patient without simply accepting everything that is said; weighing up options and making a considered decision based on a good understanding of the problem and any procedures offered.
In the case of PN, generally the NHS is totally out of it's depth anyway, unless you do manage to get to see someone who does recognise the problem, as indeed the Bristol team do.
Otherwise I could get my Tarot cards out
Andrea please let us know what you are thinking and how you are. If the idea of surgery is causing you major angst, maybe go for the stim? as it is another option open to you. Could you be transferred to NHS for that if BUPA won't pay?)
I know another guy who has had a stimulator that has worked well for over a year but is now exploring the surgical option. (Baranowski and hoping to go to Bristol,) at least thankfully you are already there.
Take care all,
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.
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chillijava
- Posts: 164
- Joined: Wed Aug 15, 2012 8:36 pm
Re: surgery
thanks all, i have thought of nothing else recently and my husband and i sat down last night and talked. we weighed things up and i have decided that because i have no quality of life at the moment that i am going for the surgery. mr dixon has said that i will need physio after the surgery, so thats that sorted.
i was given the option of either mr dixon or mr wong for the surgery but opted for mr dixon has he did my prolapse surgery last year and knows of my case inside out. if i still have pain after 6 months i will be offered ketamine infusions and epidural blocks and if still no joy then the stimulator is the last resort as per dr greenslades report.
things at the moment are bad in my life, i have my elderly mother coming to live with us shortly as she has altzheimers and i found out last night that one of my beloved staffys has got cancer, it just never ends
andrea
i was given the option of either mr dixon or mr wong for the surgery but opted for mr dixon has he did my prolapse surgery last year and knows of my case inside out. if i still have pain after 6 months i will be offered ketamine infusions and epidural blocks and if still no joy then the stimulator is the last resort as per dr greenslades report.
things at the moment are bad in my life, i have my elderly mother coming to live with us shortly as she has altzheimers and i found out last night that one of my beloved staffys has got cancer, it just never ends
andrea
Re: surgery
Andrea,
So sorry to hear of the struggles and extra issues in your life. Very glad you could come up with a plan to move forward and I wish you the very best on the surgery. Take Care
Janet
So sorry to hear of the struggles and extra issues in your life. Very glad you could come up with a plan to move forward and I wish you the very best on the surgery. Take Care
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: surgery
Thanks for the update about your decision Andrea. I really do think that the plan you have worked out for you makes a lot of compassionate medical sense, which is exactly what I would expect from this team 
Sorry to hear about your Mum and your dog. Dealing with people with Alzheimer's can be be challenging to say the least, the best advice I ever heard was 'people with Alzheimer's can't live in our world, so you need to step into theirs. This becomes more and more necessary as the problem progresses. Not sure what stage your Mum is at. I read a book called contented dementia by Oliver James which is very helpful too. Not everything is applicable to everyone but you can pick up bits and pieces that may help you all.
I can remember a time when I used to breeze through life, can you? Able to clamber over any obstacles almost effortlessly. What happened!!!! There must come a time when everything just gets dumped!!. Thing is you will be amazed at yourself when you do see some light at the end of the tunnel. Mine is winking at me from afar. . . but it is getting closer.
Just making that decision will bring some calm too I hope.
Take care,
Helen
Sorry to hear about your Mum and your dog. Dealing with people with Alzheimer's can be be challenging to say the least, the best advice I ever heard was 'people with Alzheimer's can't live in our world, so you need to step into theirs. This becomes more and more necessary as the problem progresses. Not sure what stage your Mum is at. I read a book called contented dementia by Oliver James which is very helpful too. Not everything is applicable to everyone but you can pick up bits and pieces that may help you all.
I can remember a time when I used to breeze through life, can you? Able to clamber over any obstacles almost effortlessly. What happened!!!! There must come a time when everything just gets dumped!!. Thing is you will be amazed at yourself when you do see some light at the end of the tunnel. Mine is winking at me from afar. . . but it is getting closer.
Just making that decision will bring some calm too I hope.
Take care,
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.
Re: surgery
The "elephant in the room" for me though is the "success" rate for surgery. I put success in inverted commas because I think it can be defined quite loosely as an improvement in pain levels, not a total cure, which I understand is rare. If I were in enough pain to seriously consider surgery, I hope I would be able to ask the surgeon :
1.How many pudendal nerve decompression surgeries have you carried out and how many of those resulted in a complete cure?
2. How many of the surgeries resulted in a long term reduction in pain that enabled the patients to sit normally for several hours without pain?
3.How many of the surgeries resulted in long term increases in pain?
I've read the archived survey on this site.
1.How many pudendal nerve decompression surgeries have you carried out and how many of those resulted in a complete cure?
2. How many of the surgeries resulted in a long term reduction in pain that enabled the patients to sit normally for several hours without pain?
3.How many of the surgeries resulted in long term increases in pain?
I've read the archived survey on this site.
"if you want to keep a secret you must also hide it from yourself" Orwell
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chillijava
- Posts: 164
- Joined: Wed Aug 15, 2012 8:36 pm
Re: surgery
i have already been told not to put my expectations up too high by mr dixon and to be honest i dont think i will ever be pain free but to have a reduction in the pain is what i am aiming for so that i can drive again , wear tight jeans, bend and squat without having a flare and walking my dogs which also causes a flare and then it would be nice to be able to fly to go on holiday, i know that it will maybe never go away and i can live with but as long as i eventually have pain reduction for me thats as good as it gets. my surgeon is confident he can improve my quality of life and get me sitting
andrea
andrea
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chillijava
- Posts: 164
- Joined: Wed Aug 15, 2012 8:36 pm
Re: surgery
i have already been told not to put my expectations up too high by mr dixon and to be honest i dont think i will ever be pain free but to have a reduction in the pain is what i am aiming for so that i can drive again , wear tight jeans, bend and squat without having a flare and walking my dogs which also causes a flare and then it would be nice to be able to fly to go on holiday, i know that it will maybe never go away and i can live with but as long as i eventually have pain reduction for me thats as good as it gets. my surgeon is confident he can improve my quality of life and get me sitting
andrea
andrea