PNE Ironman athlete

[Pelvis Stressly]

Wasn't the point of my post Celeste...just used that quote to demonstrate that ART is not the same thing as physio.

[ezer]

ART was popular for a while for PNE patients which was evident on the now defunct pudendal.info forum. People were flying to Colorado to get treatment from Leahy himself (the inventor of ART). The bottom-line is that it did not help PNE patients and the interest died down.

[Pelvis Stressly]

Dr. Andrew (Cornwall chiro) feels that ART in conjunction w. a specific set of other therapies (shockwave, laser, etc.) can relieve symptoms in PNE patients. And he's been getting promising preliminary results to back that hypothesis...but I've already discussed all of that in my thread about it in the Case Updates section, so won't re-hash it here.

Was just interested to see that Violet had managed to find that same article.

[Faith]

I've had ART and it REALLY flared me bad! I think it was continuing to stretch an overstretched nerve (in my case). MY PT did it.... alot of PT's are trained to do ART as well.

Did he have PNE? We can't know...he hasn't had surgery yet.

To a certain extent PNE is a diagnosis of exclusion (you rule out that you don't have any of the other conditions that cause similar symptoms, like Prostatitis, then go from there). But that said, there are also lots of non-surgical methods of testing for PNE (beyond just the aforementioned 'order of elimination')...blocks, 3T MRI/MRN, PNMLT, etc. I'd agree that maybe none of these are 100% conclusive, but if they corroborate symptoms, you can get a pretty good pre-surgical picture (crucial, given that no one wants to undergo a procedure as risky as the PN decompression surgery merely for 'exploratory purposes'!).

I'll never figure this condition out! I thought PN was diagnosed by blocks and PNE was diagnosed and confirmed in decompression surgery. Oh well.

[Pelvis Stressly]

I've had ART and it REALLY flared me bad!

Dr. Andrew would say this is actually necessary though Faith (unfortunately). Here's a direct quote...

"Scar tissue (I will use this term to describe adhesions, fibrosis, etc.) is essentially targeted by ART and Shockwave to cause stretching, softening, and an inflammatory response and thus ultimately removal. This is the reason why a flare up of symptoms occurs initially, and why it is necessary. Re-introducing inflammation is essential to direct the body's inflammatory mediators and histological mechanisms such as macrophages to break down the adhesions we are targeting. Essentially, instead of surgically removing adhesions and fibrosis, we direct the body to do it on its own using its own inherent mechanisms."

alot of PT's are trained to do ART as well.

I agree. But that doesn't make ART the same as PT (not sure if that's what you were implying).

I thought PN was diagnosed by blocks

We need to coordinate our language first. Does the 'N' above stand for 'Neuralgia' (nerve pain/irritation) or 'Neuropathy' (nerve damage)? Obviously the 2 can be connected, but technically you're right...blocks really only test for/confirm the former. Guess I was just saying that they, in conjunction w. the other tests I mentioned, can at least help in contributing towards a pre-surgical diagnosis as to whether any entrapment is occurring (after all, patients need some justification before committing to what is a fairly risky surgery!).

[scaredgal]

How could anyone cycle in 5/10 pain???

Pain is relative - especially with hardcore athletes. There are a lot of injuries professional sports (or even hardcore recreational sports) people deal with that would put many sedentary people on the sofa.

I have a friend who pops pain pills by the handful - diehard marathoner. Had a hip replacement and was told never to run again, yet he still runs marathons. Most of us would probably think of him as foolish, but I think if you have ever had a passion for athletics that hits you to the core, you can understand.

[Celeste]

if you have ever had a passion for athletics that hits you to the core, you can understand.

I have a passion for staying out of the hospital.

[Karyn]

I have a passion for staying out of the hospital.

[Pelvis Stressly]

But scaredgal raises the valid point that if a person is unable to continue doing the things they're most passionate about in life, how 'cured' are they really? I mean, pain relief is obviously the priority here for any treatment (surgical or otherwise), but is it the only measure for success? The ideal fix would obviously be the one that provides said pain relief without any major accompanying lifestyle changes.

Which is why I feel it's crucial to keep an open mind re. any new developments being discussed surrounding this condition. Sure they're not all going to work, but research & discussion are the only way treatment improves. And I think one thing we can all agree on here is there's clearly room for improvement in this field (if not, we'd all be fixed!).

[Celeste]

But scaredgal raises the valid point that if a person is unable to continue doing the things they're most passionate about in life, how 'cured' are they really? I mean, pain relief is obviously the priority here for any treatment (surgical or otherwise), but is it the only measure for success? The ideal fix would obviously be the one that provides said pain relief without any major accompanying lifestyle changes.

I think each person has to weigh these issues for himself. If he can still do his preferred activities while in neuropathic pain, then there may not be any reason to seek treatment. But if preferred activities are completely impossible while in neuropathic pain, is it really better not to try something? I would agree that there is an ideal (fix it and have no change to how you were at the time of pain onset) but if that isn't possible, how much of your life would you be willing to wait for it to become possible in your mind? What can you be happy with?

I think sometimes we forget that people also age and must adapt to bodily changes whether they like it or not, and that those changes may happen at unpredictable rates. There is already a framework for learning to accept that reality and still be happy; talk to your elders about their experiences as they changed with time and you can learn a lot about psychological resilience. People who've survived trauma may not ever be "the same", but they too can be happy again. Much of medicine consists of trying to solve the stated problem as well as possible and incurring side effects. Many people who go through chemotherapy will be left infertile or have nerve damage in their extremities, or have other chronic issues that they have to accept, or maybe even risk getting other cancers later as a result of the medication. It's true these are horrible choices to have to make. They made the choice to try a treatment that would prolong their life.

There is a saying: the perfect is the enemy of the good. Obviously everyone wants an ideal, but no one can have a guarantee of a given outcome in any medical treatment even if they think they've waited long enough for an optimal procedure. Each person has to decide if that is enough to stop them from trying. I don't pretend that it's an easy thing to contemplate. However I think most people have a pragmatic nature and reach a point where they are willing to get off that fence and try what they think is their best shot. The answers to all of these questions are different for everyone; I also think a lot depends on your stage in life when you go through it, as to what urgency may drive you. Younger people may be more willing to go forward, driven by existing or desired children. Somewhat older people may wish to give it more time if the demands on them are fewer. The oldest patients may decide it just isn't worth it, or they may decide they have nothing to lose. It's so personal, and it's complicated, and yet you can think you have your mind made up and then want to switch. I empathize with those who are still on the horns of their dilemma.