Surgery Success Rate

[Violet M]

Gsystems, there is a hip chicks unite forum where you might be able to get more info on the hip issues. Sorry, I don't know the answer to your question on that.

Violet

[ezer]

nyt, I was travelling when you wrote the following sanctimonious post that you made to my attention. I'll respond to it now.
http://www.pudendalhope.info/forum/view ... 450#p47450

Ezer, I wasn't going to get involved in this conversation but will only speak this once as I am quite concerned that your passion for what cured you will work for everyone.

I never mixed my skepticism for surgery which I have progressively developed since 2011 and my mindbody practice which I have started in 2013. You are making the leap, I did not do that.
My one and only link is that my mindbody cure allowed me to have the necessary clarity to look back at my foolish PNE surgeries more serenely.

Where did I say mindbody practice cures everybody? Where?

However, I feel it has gotten to the point that you believe no one should have surgery. My question to you, have you born a child that resulted in pudendal neuromas due to severe vaginal tears during delivery, had a hysterectomy that was too aggressive and damaged the pudendal nerve as the uterus was pulled through the vagina or mesh placed in your pelvis that has a suture through the pudendal nerve and now have your pelvis full of scar tissue.

Again, you impugn on me theories that I never made. That's a violation of the code of conduct on this forum nyt. I stated that my stats only covered people that did not have a prior surgery.

To think that surgery should not be considered part of a treatment option especially when there are conditions that I just mentioned that put women at a much higher risk of developing PN then men is disturbing to say the least.

You are distorting what I wrote. Where did I say that surgery should never be considered? As mentioned by Violet, it is a violation of the code of conduct.

There are many doctors that do PN surgery now compared to even 8 years ago when I was diagnosed. We have no idea how many patients have PN surgery every year because they do not all come to this forum nor do the doctors talk about how many PN surgeries they do in one year and that varies by physician.

No, it is probably lower today. Robert will retire soon. Houston more or less stopped. Marvel stopped. Antolak stopped. No more PNE surgery team in London. Roche stopped. I am not sure how long Bristol will persevere. There will always be fringe doctors of course.
Mayo stopped doing that surgery because they realized it is not working. Stanford did the same. Their opinion is not exactly lightweight nyt.

The best way to really understand the success rate of pudendal surgery would be to do a large multi-physician study that would compare approaches, severity of entrapment which could be determined by monitoring the changes in the electrical activity of the nerve during decompression, the cause of the pudendal nerve damage, treatments tried before, and a number of other variables that would help determine the exact success rate, help narrow down why some individuals are cured, some improve, some have no changes and some get worse.

Of course a $$$ study would be great. You are stating the obvious nyt. So what? I worked with the data I had. At least I tried to quantify what I had instead of believing in that 80-100% success rate fairy tale.

It has been my observation that the ones who continue posting on this forum are those who did not improve enough from surgery or get cured that are still seeking answers to get a better quality of life.

I disagree. It is the complete opposite. Many people that got worse left the forum sometimes quite angry. I know I corresponded with a bunch of them. Cured people leave the forum after thanking pudendalhope and posting one last time.

When I first started on this forum there was a woman I spoke to who had surgery by Dr. Conway and had no improvement. She then went to Dr. Hibner for a redo and I can't even tell you the last time she posted on this forum, several years ago because she got her life back after the 2nd surgery to the point that she no longer felt like she needed the support nor information of this group. Was she considered in your statistic?

Oh please. It is statistics nyt. By definition it is a projection. A collection, analysis, interpretation, and presentation of a limited available data-set. Of course I did not interview all the people in the universe that had PNE surgery. Tell your friend to contact me and I will include her in my statistics. But by the same token, tell all the surgery failures that you know to contact me as well. Fair is fair. Right?

The question you will never be able to answer, if you had done the emotional work before surgery would you have been able to cure yourself? Since you had surgery you have no way to determine whether the surgery helped contribute to your cure together with your emotional work. The only way to answer those kinds of questions is to have a group that didn't have surgery and do emotional work and see if they get cured and a group with surgery that don't do emotional work and third group that has surgery and does emotional work.

No you cannot measure how well people do the "emotional" work. It is not obvious. It took me more than a year to "get it". People have a tough time distinguishing between the thoughts around emotions and the emotions themselves. But if you are so inclined I am opened to suggestions.
I do see where you are leading me. Surgery cured me and I am just being ungrateful.
Let me tell you once again why I think my surgery did not help me.

- 2 years after surgery I was at my worst. I was a mess and on disability. But all the doctors agree that at the 2 year mark you can tell if the surgery was successful or not. Let me tell you it was not successful.

- I was diagnosed with entrapment at the alcock's canal repeatedly. My alcock's canal was never decompressed. I had a decompression at the piriformis and a decompression at the dorsal nerve. I am theoretically still entrapped at the alcock's canal and possibly at the ligaments. I was offered a third surgery to decompress the alcock's canal (sounds familiar?).

It is interesting that surgery improvements are always accepted at face value (even if many years later) but my surgery failure is being scrutinized, dissected, and seen with utmost suspicion.

If surgery had worked, I would have been ecstatic. It is obvious. I spent a fortune on those.

Ezer, just imagine if you have a mesh sling incorrectly placed in your pelvis such that you had difficulty voiding, overactive bladder symptoms that almost drove you out of your mind, feeling the sling inside of you and the doctors treatment was to manually adjust the sling by pulling on it through the vaginal epithelial wall that gave you such bad pain in your groin and leg you almost scream that then by one week after the pulling on the sling left you curled up in a ball with so much pain in your pelvis and the adductors of your legs you could barely walk, two surgeries to get the mesh out of which one of them took 7 hours, a hysterectomy done at the same time as the sling in which the trocars were placed too low and resulted in multiple nerves in your pelvis being damaged, incorrect positioning during the surgery that resulting in femoral neuropathy and you figure out for yourself that you have classic signs of PN that started within a few days of the hysterectomy and bladder sling, you have the feeling of a knife stabbing you in the vagina, something stuck in your vagina, rectal spasms, can't poop, can't have sex because it is painful, can't sit and if you sit even more than 5 minutes too long then it burns to urinate and the rectal spasms get worse, can't stand, clitoral pain, hyperarousal symptoms, labial pain, everything in your pelvis hurts and your butt aches so bad all the time all you want is someone to rub it, you can't straighten your left leg because the quads spasm, your adductors are so spasmed that if you don't get botox into them you have to physically lift them otherwise they spasm, your legs turn purple when you stand for more than 5 minutes and can turn almost black if you stand for 30 minutes unless you get ketamine and lidocaine infusions which decreases some of those symptoms, if your legs get too hot you get a heat rash that runs along dermatome 2 distribution, and you can't stand having anything touching the adductors of your legs or your perineum without extreme pain. If you can cure all of that with just paying attention to your emotions then I would love to trade bodies with you!

Again this is a blatant distortion of what I wrote. Where did I say mindbody work is a cure all? Where nyt?
You keep linking my mindbody practice and my opinion of surgery. Where did I link the two?

All am I saying is that surgery has a very poor success rate. A tragically low success rate.

[Karyn]

Ezer,
Was this really necessary? Especially, almost FIVE months later?!?

NYT (quote):
"Ezer, I wasn't going to get involved in this conversation but will only speak this once as I am quite concerned that your passion for what cured you will work for everyone."

Where did I say mindbody practice cures everybody? Where?

I can't speak for NYT, but it doesn't appear to me that's what she was saying. Personally, I can understand why she would write that compassionate statement. Your threads over the past several months have a fanatical tone to them. Why even create this thread? Clearly, you're trying to make a point.

You keep linking my mindbody practice and my opinion of surgery. Where did I link the two?

Same comment as above.

It is interesting that surgery improvements are always accepted at face value (even if many years later) but my surgery failure is being scrutinized, dissected, and seen with utmost suspicion.

I'm not sure if surgery improvements are always accepted at face value by everyone. As far as your surgery being scrutinized ...
I've noticed a lot of support for your method of recovery. Mine included. It's your manner of presentation with these long, argumentative, multi-linked threads that's a bit off putting.

Respectfully,
Karyn

[river133]

Dr. Antalok retired ,although he trained another Dr.to take his place in Mpls. I am now going to the same clinic as when I was seeing Dr. Antalok. Dr. Schultz works and owns the same clinic. I was speaking to the nurse that had worked with Dr. Antalok. I asked her point blank how many surgeries were successful with pn. She said "very few". Oh,and Dr Schultz has a different theory than Dr. Antalok about pn surgeries. Have yet to have a conversation with Dr. Schultz about this but plan to.

[ezer]

Karyn, I started this thread so of course it is of great interest to me. nyt advised me 2 days ago to look at her old posts to understand her medical problems so it is when I stumbled on her reply to my post on the surgery thread rebuffing my postulate that surgery results are poor.

I cannot let arguments like "you did not include my friend in your statistics therefore your statistics are wrong" be left unanswered. I cannot let somebody say that I wrote that mindbody is a cure all. That surgery should never be considered. I never wrote that.

There is a massive difference between a 10ish% success rate and 80-100% success rate. Do you really believe it is an inconsequential difference that we should keep quiet at all cost? Would you have done the surgery if there was only 1 chance in 10 to get better? I would certainly not have.

Do you really believe it is helpful to tell people that the surgery has a 80-100% success rate?

it is your absolute right to despise my style. I don't mind. It would be great if you could post what made you better though.

[ezer]

Thanks river133. Yet again more doubts about surgery. It would be really interesting to hear what Dr. Schultz says about it.

[ezer]

karyn, I am reading your older posts trying to understand what healed you and I am at a loss. I am not being cynical and I understand that my style annoys you so skip and no need to answer.

It is unclear to me if your Tarlov Cyst surgery was successful. You never mentioned your progress unless I missed it.
If I understand correctly you had TG PNE decompression surgery but you still had pudendal pain afterward. But then another doctor told you that you had Tarlov Cysts and that generated the same PN pain?

Isn't it a bit of a strange coincidence that your PN entrapment and unrelated Tarlov Cysts created the same PN pain?

Well again, no need to answer but I have been fed too many crazy theories by the PN docs that were completely made up on the spot but that kept morphing from office visit to office visit. I eventually had 2 decompression surgeries all based on pseudo-scientific nonsense:

- PN Docs 1-5: it is the alcock's canal according to 5 docs + PNMLT+ MRN + 3TMRI
- PN Doc 5: Nah I change my mind, it is the piriformis because it is spasming (surgery1)
- PN Doc 6: Doc 5 is completely wrong, it must be the dorsal nerve (surgery 2)
- PN Doc 5 again: Hmm no then let's do the alcock's canal this time (no thank you)
- PN Doc 6 again: Hmm I can offer you the TG surgery (no thank you)

The craziest ideas came from Dr. JM W. --a famous PN-aware doctor in San Francisco with an 88% success rate-- that had me have a circumcision to remove the painful penile spot. Never mind that all along he said it was referred pain from PNE in the alcock's canal so it contradicted all his prior PN theory. He also had me take homeopathic remedies after nerve blocks to improve the healing.

I was desperate and I needed to believe in something.

Of course some excellent doctors kept warning me but I ignored them.

[Karyn]

Hi Ezer,

karyn, I am reading your older posts trying to understand what healed you and I am at a loss.

It's not you. I never posted anything about being healed.

It is unclear to me if your Tarlov Cyst surgery was successful. You never mentioned your progress unless I missed it.

No, you haven't missed anything. I just had the surgery last April and am still recovering. But yes; I would say my TC surgery was successful. For the first time in seven years; I no longer feel my symptoms are progressing.

If I understand correctly you had TG PNE decompression surgery but you still had pudendal pain afterward.

Yes, that is correct. I had the bilateral decompression with Dr. Conway in March 2011. However, I still feel this surgery was also successful. I was by no means "cured", but some of my symptoms had resolved enough for me to return to work after six months. Unfortunately, PN entrapment wasn't my only issue.

But then another doctor told you that you had Tarlov Cysts and that generated the same PN pain?

Yes, you're correct again. I knew something else was wrong, because the pelvic neuropathies had spread to my legs and feet. Eventually, resulting in motor dysfunction of the legs and bilateral foot drop.

Isn't it a bit of a strange coincidence that your PN entrapment and unrelated Tarlov Cysts created the same PN pain?

No, not in the least. Most TC patients experience pelvic pain and dysfunction. The only real difference is, TC patients also experience lower extremity pain and dysfunction, as well.
As most of us are aware, the PN is a branch of S2 - S4. ALL of those sacral nerve roots had filled with CSF
(cerebral spinal fluid), causing a blatant compression of my sacral nerve roots and their branches, as well as eroding through my sacrum. Essentially, I had been walking around with Cauda Equina Syndrome symptoms (which is considered a medical emergency) for the past several years. However, this was largely ignored by the medical community because I lacked evidence of that bulging or herniated disc. Yet, the symptoms were exactly the same. And why wouldn't they be? The same nerves are affected with both conditions.

Do you really believe it is helpful to tell people that the surgery has a 80-100% success rate?

No, not at all. I feel very badly for patients who informed of this by their surgeons. Neither of my surgeons told me any such thing. Nor was I provided with a "successful percentage". In both cases, I was informed the HOPE for surgical success was based on improvements with pain and function. Dr. Feigenbaum's prognosis was the HOPE for my symptoms to no longer progress.

Would you have done the surgery if there was only 1 chance in 10 to get better? I would certainly not have.

Absolutely. With the way my symptoms were progressing, I was facing self-cath'ing, bowel treatments and complete loss of lower extremity function. I had written many time prior to my PN surgery that I viewed surgery as chance. I don't regret either surgery in the least.

Ezer, I would like to make a public statement in support of Mind/Body work. This has been very helpful to me with managing my pain over the past several years. Throughout the worse of my symptoms, I did not take any medications. The short of it is: I was not able to achieve any significant pain relief AND the drugs made me feel worse than I already do.
I haven't been able to cure myself employing these practices, but I'm effectively managing my pain better than any MD I've consulted with.

I hope I was able to provide some clarification for you (and others). I'd be happy to answer any questions you may have.

Kind regards,
Karyn

[ezer]

I never posted anything about being healed.

Oh, I thought "I've noticed a lot of support for your method of recovery. Mine included." that you were referring to the support you received yourself from the forum members for your own method of recovery. I realize now that you were referring to me, not you. I am sorry to hear that.

Thanks for your detailed explanation. It is true that Dr. Conway as far as I know does not make some wild claims like some other surgeons.

I am really curious about what your thoughts are on some of the theories on fibroids and endometriosis from Dr. Christiane Northrup MD and Dr. Lissa Rankin MD.

I would have been outraged by them 3 years ago. I am not so sure anymore.

I was diagnosed among other things with non-bacterial prostatitis or prostatodynia by non-PN aware urologists. I was absolutely outraged by the psychological connotation that comes with such pathology (my pain is real, how dare you say it has a psychological origin) but at the end they were right... and I erred 10 years with that prized PNE diagnostic that was slapped on me and that brought me absolutely nowhere. I cannot be the only one on this forum.

[stephanies]

Ever,

Can you share more information about the endometriosis and fibroid theories you mentioned? I have widespread likely endometriosis (can't be 100% confirmed without laparoscopy) as well as good sized fibroids. I have been very hesitant to have these explored surgically although some doctors have recommended it.

Karyn, thank you for the update on your journey. I am sending positive thoughts your way.

Thanks,
Stephanies