Surgery

[ezer]

A practitioner that would rather not have more business? How very strange. In any case, good luck and make sure to tell us how you are doing.

There is absolutely no need to think. Try it. When you drive your car, you don't think of every turn. It is automatic. It is in your implicit memory.

No, I don't practice "not thinking" anymore. I only catch myself if I go into negative patterns of thinking. That's all. It is completely unnecessary.
Watch the Eckhart Tolle video I just posted or even better, read "the power of now". You will understand. Most of our thoughts are about the past and the future. Never the present. You don't think about emptying the dishwasher when you do it. You think about your boss or the horrible day you just had. Not about your dishes.

Why no thinking after you get up? Simple. When you wake up you generally have no pain. As soon as you start to think you are back in the fight/flight mode and the pain comes. By not thinking you don't enter that mode and remain pain free as long as you do not think.

your probably the only person that says is healed on this forum

Check bunny and susanjane in the success stories section. They recovered just like me. I am not an exception.

Interesting talk on TED about back pain and emotions:
https://youtu.be/tiwmVTScusg

[Violet M]

Your surgery success list is composed of only 9 names including yourself!! *gasp* That's it? You have spent all those years heading pudendal and pudendalhope and you know only 8 patients that are surgery success stories?? That is really tragic.

You are still evading my question: Do you think Dr. Filler and Dr. Dellon are being truthful. Do you think 87% of Dr. Filler's patients experience an improvement of 50% or more. Yes? No?

Well, Ezer, I specifically said that the patients I listed who had success was not an all inclusive list so I don't know why you are gasping. I can't possibly list all of the patients who've had success stories over the 11 years I've been moderating the forum.

I would never say that I believed that 70% is the success rate because I don't think it and never have. But I guess you think you know better than I do what I thought and said?

Regarding Dellon and Filler, I haven't had time to read the articles you just posted so I can't really comment on their numbers. I will try to take a look at the articles. What I have said is that I think surgery should only be considered as a last resort and you shouldn't have it unless you are willing to take the risk of getting worse.

Dom with whom you keep agreeing with also said that in his opinion only 10% of patients benefit from PNE surgery. That pretty much eliminates surgery as a valid treatment don't you think?

Just because I agree with Dom on one thing doesn't lead to the conclusion that I agree with him on everything. I don't accept 10% as the success rate of surgery. It's totally unscientific. I just hope Dom gets well, whatever he tries.

BTW, I am not the head of pudendalhope, I'm just the secretary. But at least I'm not trashing other people's treatments options. I see you don't believe surgery is a valid option. You have been trashing other options (PT, Wise, surgery, etc.) except your own, the mindbody approach, even though we know very few people who have been helped by that approach. There are people who have been helped significantly by all of these approaches. Why do we have to trash any of them?

Violet

[ezer]

You have been trashing other options (PT, Wise, surgery, etc.) except your own, the mindbody approach,

Trash? I am pointing to the inconsistencies and how those so called studies twist statistics. I am not sure that is trashing. I certainly used sarcasm because some of those claims are so ridiculous: 87% success rate. 90% success rate, 100% success rate (try to beat that Filler).

Where did I claim mindbody is for everyone and the only path to healing? All I did with mindbody healing was to explain what it is about. Before my posts, Mindbody healing was an object of derision on this forum (your rubber band story). Since I posted, 2 more forum members came forward having experienced a similar healing journey. Thankfully they did not have surgery like I did.

I do not make any claim regarding the "success rate" for mindbody healing? It is probably very low because it requires a full commitment and overcoming doubts. Many other practitioners keep making ridiculous claims on their success rates by contrast and you seem to accept those claims at face value.

Regarding Dellon and Filler, I haven't had time to read the articles you just posted so I can't really comment on their numbers. I will try to take a look at the articles.

Please.

I would never say that I believed that 70% is the success rate because I don't think it and never have. But I guess you think you know better than I do what I thought and said?

Okay, I just looked on my computer and I do have a copy of our discussion that I saved when I was doing my statistics and that I retrieved tonight. I am going to edit it carefully to not disclose anything private (As a side note, you mention below the Tipna statistics, so many on that list have sadly relapsed since if you look closely).
In any case, let's close this issue once and for all. Be the judge:

Post 1, Ezer said:
The surgery successes are puzzling to me. Where are they?
I know that the standard reply is that they move on with their lives etc. I do not buy that. I know a bunch of people that had surgeries <snip> and they are still struggling. <snip>

Post 2, Violet said:
based on your experiences, I can understand why you have a negative view of surgery and surgeons. And I think it's OK to vent.

Regarding cures. We could look at a <a group of people I know and have communicated with> who have had surgery.

<8 names listed>
+ ezer-- significant improvement, back to work, doesn't think improvement was due to surgery but can't prove it


Of nine <snip> who had surgery, 7 have had significant improvement. That's 78% with significant improvement in PN symptoms, similar to the number <someone> had calculated from gathering data on the tipna forum and slightly better than the stats published in the literature. If we put ezer on the no improvement list we have 66% which is about what's in the published literature. Of course this isn't a scientific number but you might call it a random selection of people.

Post 3, Ezer said:
My improvement was not due to surgery. If I can't prove it, you cannot prove that your improvement was due to surgery either. You guys had surgery a long time ago and I can make the case that you improved just because of time and by not obsessing over it anymore (like <name1>).

Please remember that according to my MRN + the opinion of 3 "experts", I am still entrapped at the alcock's canal and that has never been decompressed.

I have my own list. People with whom I exchanged emails for several months:

<LIST of 22 names. Not disclosed here>

It is 12% surgery success rate (note, I revised my post to update the statistics, I ended up at 13.5%)
Those are not people that I contacted after their failed surgeries. I communicated with most of them before and after surgery.
I would appreciate to hear from <name8> directly how he feels and not from you Violet <snip>. Regarding <name5>, I am sorry but I am not buying it according to what others shared with me. For patients that have improved 4-5 years after surgery, you cannot make any assumption.

[desperate]

Interesting Ezer, I'll look into it. You may be onto something. And I guess it's true. Your mind wonders everyday. I find myself thinking about my condition every second of my day. Makes sense.

And ya these practitioners have enough business. They can't even make time to see me, let alone others. but ya ill post if anything changes. Maybe I'll join you on that mind body stuff, or at least try.

[ezer]

Nice editing my post Violet.

To recap, you know many people that have improved with surgery but you can only remember 8 names (we also discussed quite a few relapses).
Did surgery really heal you Violet? You keep bringing up your own surgery in your posts which is strange. Are you in need of validation? On Tipna you were saying that you were "somewhat improved" back in 2006. Then you keep doubting my cure. Perception is projection Violet. Basic Jungian psychology.


Okay, no need to ban me. I am out of here. Goodbye.

[bikelover]

Fellas please, Ezer, while I agree with you on the surgery outcomes, I personally think you need to backup on the aggression switch one step buddy. You talk about the mind buddy stuff, yet you seem angry and full of sarcasm all over, pardon me, but nobody is dismissing your mind body approach so please back off on the preachin'.
Its seems to me Violet is genuine and very prudent on her doing. I can't see a better moderator here than hers truly. So, even if you don't agree with her opinons, just please show some respect, she deserves it as much as anybody else here on this forum.... maybe even a little bit more.

I do agree with you that the mind certainly is involved. To what exempt I don't know. I personally wouldn't go as far as say that the mind body approach is the only culprit, or that it is for everyone, that would be nuts as you already recognized. Certainly, if we think we are on the worst condition ever, and we are desperate, stressed and anxious about our condition, then we start to feel every single thing in our body and get obsessed over it. I believe we are then lowering our own pain threshold, so its a vicious cycle. About the management of emotions, I still need to read your experience thoroughly to understand the methodology and put it into practice. But in all due honesty, it might be that your body just healed on its own. How can you prove that your mind body approach was what got you in better shape? Currently you don't have any PN/PNE or whatever....well let's just say pelvic pain symptoms anymore? I'm serious, not trying to be ironic...a cure will mean nothing zero, nada, no setbacks or flares..? How are you sure that embracing your emotions is what made you feel better? It sounds like a very subjective approach, and it really is. How are you able to get some scientific measurements? I guess the only answer would be to try it, and I certainly will. But to my point Ezer, its not easy for ANYONE. It was not easy for you, and certainly not easy for Violet, desperate, myself etc etc. Its really nice for you to share your experience with us in the hopes that it might help somebody. I'm hoping my current treatment works, and would help somebody too. Let's just keep focused and with the correct vibe here, and pls don't get anymore defensive, its nothing personal..

[bikelover]

Ezer, been reading on your experience. Could you be expand more and be more specific in this. I'm serious, pls don't think otherwise:

3) The most important. Anytime you find yourself aware of the pain, instantly shift your focus to your emotions: What emotion(s) am I feeling right now? (Once you have identified an emotion you should not think about it. Thinking will just re-traumatize you. You need to re-experience the emotion at a visceral level).
Emotions are not things like “I am sad” “I am happy” etc... An emotion is a mental reaction accompanied by physiological changes in the body. Feeling your emotions is to experience both the mental and body reaction (shiver, twitch etc...) at a visceral level without thinking. It is not intellectual. It is purely experiential. We are so disconnected from our emotions that it takes practice until we are able to experience them again.

I'm just kind of confused. You say to instantly shift to the emotions I'm feeling, but then you say I should now stop thinking about them or they will re-traumatize myself. What does feeling the emotion at a visceral level means? The only emotion that I can't think about, and I'm experiencing, is that I really really dislike the pain and I should stand up instead. What or how should I correct that connection between the pain I'm feeling and the respective emotion ? Could you make an effort to explain better?

When I ended up in the hospital, after withdrawing from tramadol, I have to admit it was also a little after my wife delivered our fourth child, and I was also obsessed with what was happening to my body. It all just joined in one big atomic bomb being dropped over my head, I had not slept much for 4 days straight. After that I convinced myself, as you, that this was just pain, as bad as it feels, but I did not have any strange or terminal consequences.

Certainly when my mind is at ease I feel better, like when I go out for a walk or a run, or when I write music. While exercising, the body also liberates endorphins, which help lower down our perception of pain. Exercise and movement in the long run I believe is the only thing that has truly helped me manage the pain so far. And I say manage, not cure. I mean vigorous exercise, good cardio, not PT like stepping on the elliptical and doing 45 minutes, or al least some vigorous walking for an hour. Yes, the first days I got sore, flared up and such...but If I kept at it, its gets better with time. Its like your body adjusts.

Just recently I had to stop the exercise because I had some plantar fasciitis on my left foot. I've been like that for a couple of weeks. At first, I tought it might be related. But, a friend suggested I should buy some fresh running shoes and so I did. Two days ago my left foot was still hurting, but I put on the new nike's and decided to go for a long walk. I walked for 1:30 hours or so. The next day, my legs felt sore all over! but good sore...the pain in my foot however, diminished from say an 8 to a 3. I'm plan to go out for a long walk today as well. I really think it was the shoes! I will try and keep the long walks and see how it goes...

[Alan1646]

I am grateful to those who.run this site for providing information and support.It's clear that there is reputable,mainstream medical opinion at the National Hospital for Neurology in London that does not recommend surgery or hands on Physiotherapy for PN / PNE, so Ezer is not making any wildly controversial statements when he questions the "success"rates for these options. We need people who question prevailing beliefs and who suggest radicalNew methods that work.

[Violet M]

No problem, Ezer. No one is talking about banning you, particularly after your valuable years of service to this organization, even though you have breached the terms of service of this forum. Late last night I saw that you had posted our private conversation publicly so I just took it down temporarily until I could make sure that you had edited out any private information about other people. After the fact, I now give you permission to post our private conversation. I have edited out the description of who the group was but I put the rest the conversation back into your post. I see that our conversation confirms what I have been saying all along.

Post 2, Violet said:
Of nine <snip> who had surgery, 7 have had significant improvement. That's 78% with significant improvement in PN symptoms, similar to the number <someone> had calculated from gathering data on the tipna forum and slightly better than the stats published in the literature. If we put ezer on the no improvement list we have 66% which is about what's in the published literature. Of course this isn't a scientific number but you might call it a random selection of people.

I stated that the stats I used as an illustration was not a scientific number. Nowhere did I say I thought 70% success rate was an accurate number. I was just pointing out that I could come up with a completely different number than you by using a different random group of people. Which only goes to show that neither number is accurate. I guess you must have misunderstood what I said and I apologize for not being more clear.

I am aware of someone from tipna who relapsed 10 years after having PNE surgery. Personally, I would have chosen to have surgery if I knew it would give me 10 good years.

Did surgery really heal you Violet? You keep bringing up your own surgery in your posts which is strange. Are you in need of validation? On Tipna you were saying that you were "somewhat improved" back in 2006. Then you keep doubting my cure. Perception is projection Violet. Basic Jungian psychology.

Ezer, I don't doubt your cure. You can read my signature but to add to it, I don't take any medication for PN, I sleep well at night, I have a full time job, can sit for hours at work, and I just worked out for 45 minutes this afternoon. I can't jog, go on a treadmill, or do a lot of heavy lifting due to ligament issues but I am very pleased with my recovery.

It's clear that there is reputable,mainstream medical opinion at the National Hospital for Neurology in London that does not recommend surgery or hands on Physiotherapy for PN / PNE, so Ezer is not making any wildly controversial statements when he questions the "success"rates for these options. We need people who question prevailing beliefs and who suggest radicalNew methods that work.

Alan, I have no problem with Ezer questioning the success rate of surgery. What I do have a problem with is the tone in which he is doing it. And who is to say what prevailing beliefs are? There are so many different beliefs about PN and PNE.
I would be interested to hear what the National Hospital for Neurology in London recommends for treatment of PN/PNE and how successful their treatments are.

Violet

[Bertie]

The NHNN in London.....is totally against surgery it is not offered at all..when I went there for a consultation I mentioned France for surgery, and they are very scathing of it, as they said the true amount of failues are not published and the extra problems the surgery causes with destabilising the pelvic floor causes a whole host of offer problems. They have pateints who have gone to France. They also said there have been no long term follow ups of the benefits of surgery, just saying how it was when I asked the question.