Page 4 of 6

Re: Surgery and Re-entrapment

PostPosted: Mon Feb 27, 2017 4:59 am
by Violet M
Ezer, you can't pick people apart on this forum for the treatment decisions they have made. You are banned from the forum for continuing to do so. You are challenging Andy for his decision to have one surgery. When you decided to have two surgeries???

You are making things up. I never told Andy to have surgery. I was not catastrophizing or having anxiety before PNE. Dave was not banned for offering an alternative explanation as you say. He was banned for sending PM's to people advertising his business. That's just to name a few of your falsehoods.

I find it shocking that as a scientist you take your 15% surgery success statistics from reading a forum.


Re: Surgery and Re-entrapment

PostPosted: Mon Feb 27, 2017 6:02 pm
by Andy_Pablo
nonsequitur wrote:
Andy_Pablo wrote:I respectfully disagree with you on my reasons for surgery. I had surgery from the advice of several doctors who had looked at me over the course of twelve months.

But that is besides the point.

If I remember correctly you saw Dr.Greenslade that gave you 3 blocks. Some were positive, some gave you more pain. It was pretty inconclusive to be honest from what you wrote. You then decided to have surgery with Mr. Wong, Dr. Greenslade's associate (privately probably, I am not sure the NHS endorses and pays for PNE surgery). Was there any other doctor besides Dr. Greenslade that advised you to have PNE surgery? Did you consult with Dr. Baronowski?

If I remember correctly, & I do because I was present, I saw Dr. Greenslade initially. I then spoke to surgeon named Miss Ann Lyons (lovely lady), I then spoke to a surgeon named Mr. Dixon. They all recommended surgery. I then decided that surgery would be my best chance at trying to fix the cause of my pain, instead of just trying to mask it. I then spoke to my G.P. who requested funding for surgery on the N.H.S. They agreed to the request & my surgery was performed by Mr. Dixon with Dr. Greenslade as anaesthetist. But as an adult, the decision lay firmly with me. And only me.

Jax, I offer my sincere apologies to you for dragging your thread off topic.

(Have edited in name of female surgeon after I looked through my correspondence.)

Re: Surgery and Re-entrapment

PostPosted: Wed Mar 01, 2017 11:41 am
by keepmoving!
Andy_Pablo, I am new, but I wanted to wish you well with your upcoming procedure.

Have you already heard of Belleruth Naparstak? She has some material on iTunes - "Successful Surgery". Due to its demonstrated effectiveness, Blue Shield used to send it out to patients on occasion before undergoing procedures. Naparstak has a pleasant voice - no nagging, and the USMC has actually used Naparstak's materials to help combat PTSD, she is that effective.

Easy for me to say as the new guy here but I think nonsequitur/Ezer should not be banned. He challenges people to think critically about these issues, which are affecting all of us and/or people we love to varying degrees or we would not be here. Of course it is important to show respect to each other - and maintaing a civil tone. Nonetheless, anyone who questions nonsequitor/Ezer's contributions should read FFSeth's last formal post. (This is my first post, hopefully I am quoting properly.)

FFSeth wrote:This will be my last visit here. This perhaps isn't the proper place to make this post...New ideas should be encouraged and success stories should be taken seriously. People who advocate for successful treatments that do not involve surgery should be celebrated; not banned from the forum. What exactly are we trying to accomplish here? Is it more important to be right or for people to get better?

I thank God for ezer and his mind body ideas everyday. He helped me to break the cycle of fear and pain. Without him I would never have been still long enough for God to lead me to the cause of my pain. I still use many of the tools he has given me. I understand that he is a strong personality and is at times condescending (sorry ezer). But don't we need people to stand firmly against a surgery that is hurting more people than it is helping? Don't we need more success stories? This is a serious topic and needs to be treated as such. People come to this forum and read stories about a nerve block permanently making people worse or bending over causing years of pain. This is insane! we are not made of glass! My God did not create me to fear sitting down or to become permanently bed ridden because I picked up my child. Pain is complex. Lets stop ignoring the science that discounts a simple cause and effect approach to pain.

Andy_Pablo, hope you'll check out the "Successful Surgeries" stuff.

All the best with your procedure and recovery. I heard one strategy Navy Seals use for Hell Week is focusing on their next meal because it is the one thing that is guaranteed, the one thing they can control. As an instructor reminded me, there is a lot [we] can control. Take care.

Re: Surgery and Re-entrapment

PostPosted: Wed Mar 01, 2017 2:13 pm
by Andy_Pablo
Hi there. Welcome to the forum.

Thank you for your concern & for your advice. I had not spotted Seths quoted post in nearly three years of being on the forum, but I have now read & digested its content.

I will take a look at Belleruth Naparstaks work, but please be aware, & I have indicated this elsewhere, but I do actually attempt meditation excercises, albeit I make no bones about my practice technique being in their infancy.

But I digress, for me to continue talking about my situation in Jax's thread is showing a little disrespect to Jax. Any more conversation about myself will have to continue in my thread in the U.K. section.

Re: Surgery and Re-entrapment

PostPosted: Wed Mar 01, 2017 4:05 pm
by chenonceau
Personnaly i don't feel bad about Ezer or anybody else, I like the fact that people are exchanging their points of view and try to heal themselves.

About the quote from FFSeth, this kind of "testimony" is equally inspiring and terrorizing. I am an atheist, and I do not feel the urge to call up on the absence of God to justify what is happening, and in this case it really does'nt go well with invoking science on the next sentence.

As for being made of glass, I would urge FFSeth to hang out with young people suffering from Crohn's disease, ulcerative colitis, fibromyalgia, complex regional pain syndrom... and ask yourself if it is "insane" or "deserved".

I would kindly also remind that before the Treponema pallidum bug was discovered, people suffering from Syphilis were labelled as being crazy and dismissed by doctors : it's a recurrent fate for people suffering from emerging diseases.

Please try to be humble and admit that the truth of today is not necessarly the truth of tomorrow (and the truth of 200 years from now), specially speaking of science.

Re: Surgery and Re-entrapment

PostPosted: Wed Mar 08, 2017 12:40 pm
by Alan1646
The National Hospital for Neurology and Neurosurgery in London does not recommend surgery for PN/PNE. I have spoken personally to several doctors there, including Dr Baranowski and Dr Curran and that is their view, having seen many patients diagnosed with the condition. As a member of staff there told us on my pain management course, if you go to a surgeon, he or she will likely recommend surgery, just as you get vegetables if you go to a greengrocer. I think that Ezer is right and that most people diagnosed with Pudendal Neuralgia who have done nothing more traumatic than sitting down have a mind/body condition. However, I think it can be very difficult to cure. The first obstacle is recognising that it is possible.

Re: Surgery and Re-entrapment

PostPosted: Sat Mar 11, 2017 6:05 pm
by Alan1646
I don't know what the success rate is for PNE surgery at Bristol. Now that the doctors there have performed a number of operations it would be great if they could look through their records and publish the stats. In the meantime, all we have to go on is what we can glean from boards such as this one. I've searched for people who have posted that they had surgery at Bristol and this is what I've found. If I've left any out, please correct me.
Failed :
Violet recently posted an account by Kassie , who stated that she was doing well three years after surgery at Bristol, although she does seem to say that she is still taking anti-depressants-whether for pain or not is unspecified. This unscientific sample includes people who are still in bad pain after surgery and who have been unable to work because of it. Perhaps there are large numbers who have been cured but who never post here-nor anywhere else. So, all we have to go on is one success out of seven, or 14% of those we know about here.

Re: Surgery and Re-entrapment

PostPosted: Sun Mar 12, 2017 12:54 am
by Andy_Pablo
In all fairness, its impossible to judge any concrete "success" rate based on an internet forum. Especially when you class my surgery as failed, despite my two years recovery period ending mid July this yeas. Bristol could not calculate the figures either as their after care is almost non existant.

The biggest question should be, asking me & others who have had surgery if we regretted having it done. If anyone asked me that question I would answer that I do not regret having my surgery. Some symptoms have improved a lot & it has taken the edge off the pain that used to give me multiple suicidal thoughts every single day. After surgery, the improvements are enough to drastically reduce those thoughts. My life still has no purpose anymore, but it is no longer a 'desire' to die. Dont get me wrong, I wish it had been more successful, & I still hold out the faintest hope that I may improve further. Maybe thats naivety, wishful thinking, but whatever the outcome, I think having surgery was the right thing to do for me.

Re: Surgery and Re-entrapment

PostPosted: Sun Mar 12, 2017 2:43 pm
by Alan1646
I'm sorry that you've suffered so much and that the pain made you feel suicidal in the past. I do know what the pain is like. I'm not against the idea of surgery , but I'm questioning whether it helps with PN/E and what the success rates really are. I do wonder, if you were questioned by the hospital/surgeon, whether your surgery would be classed as a success, even though you are still in very significant pain that prevents you from leading a normal life. I suppose we could have a discussion about the meaning of success, but is it fair to say it certainly hasn't been a cure for the people in my list under "failed"?
If someone has, say , a hernia, and undergoes surgery for that and then after a month has no further symptoms, including pain, that would be a surgical cure. He would just have a scar to show for the surgery. If you compare that with some of the reported outcomes for PN surgery, there is a big difference in that patients are still in significant pain years after the surgery. Surgery can also have a placebo effect, complicating matters further. ... 45071.html

Re: Surgery and Re-entrapment

PostPosted: Mon Mar 13, 2017 12:11 am
by Andy_Pablo
As you have alluded to yourself, "success", is a very subjective term.