Measuring Surgical Success

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sgrandy
Posts: 63
Joined: Fri Sep 17, 2010 3:13 pm

Re: Measuring Surgical Success

Post by sgrandy »

Well, Charlie... I clearly don't have time to search forums for posts that say conservative treatments don't work. However, having been on the TIPNA forum, the old pudendal.info forum and now this one for the past 5 years, I definitely have seen posts where people claim that conservative treatments don't work and that surgery is *the* thing to do (which is definitely the case with many people).
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Charlie
Posts: 214
Joined: Fri Sep 17, 2010 11:48 pm

Re: Measuring Surgical Success

Post by Charlie »

Okay I take your point.
Tried numerous medications as well as a long period of myofascial physical therapy combined with meditation/relaxation. My pelvic floor muscles are now normal and relaxed on exam ( confirmed by many Pelvic floor PTs) yet my pain remains the same. Also have intense leg pain. Deciding on next treatment.
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Celeste
Posts: 574
Joined: Sat Sep 18, 2010 2:24 am
Location: central Ohio

Re: Measuring Surgical Success

Post by Celeste »

If conservative treatments worked for people, why would they ever go on to surgery? I think we've heard from a lot of people for whom nothing worked, so they took their best shot at something more. I don't think people are trying to be the "cool kids" doing "the" thing for it. I actually think you have to be out of options.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.

I am cured. I hope you will be, too.

There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.

http://www.tipna.org
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Quilter 2
Posts: 163
Joined: Fri Sep 17, 2010 6:24 pm
Location: North East TN

Re: Measuring Surgical Success

Post by Quilter 2 »

Hey Charlie;
Being on dial-up I can't open the sites that have tons of pictures and are very lengthy. I wish I could. Then I could prove to disability, ins. and some of the very uninformed docs I've been to that I don't stay up nites dreaming up this stuff. I swear some think I make this **** up. The ins. tells me constantly "we don't have a code for that". I tell them to get one.
Oops, off the subject. My point to Abmia22 is there is another way of looking at things. To get out of horrible pain, I was willing to try anything. Also, I'm glad he's surrounded by family and friends that are doctors, but what kind? I wish I could remember where I saw it, but a DOCTOR wrote "A doctor only treats what he knows". It was early on and I was still trying to figure out what I had, so I didn't print it, but I should have. Nothing truer has ever been said.
Thanks Charlie. If I ever get off this mountain where I don't need to use dial-up I will try to find the articles.
Nite
Doreen
Five pudendal nerve infiltrations with good results.
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
Pelvis Stressly
Posts: 297
Joined: Fri Sep 17, 2010 3:56 pm
Location: Toronto

Re: Measuring Surgical Success

Post by Pelvis Stressly »

abmia22 wrote:they see a bunch of veins compressing the dorsal nerve of the penis. No interventional radiologist will touch these veins.
Are you sure that's what's causing the problem though abmia22? Potter also saw varices in my case and suggested I have them embolized. But the numerous PN docs and urologists I discussed it with all said that there's no evidence that veins (no matter how distended) can compress the nerve...they're simply too soft to exert that kind of pressure.

Anyway, assuming they are the problem, why do the interventional radiologists refuse to embolize them in your case?

Also, re. Dellon...I find the best way to get a response from him is to contact him directly via his site ( dellon.com ). There's a link on the right side of the homepage to e-mail him directly. When I send messages that way I usually get a response quickly (as opposed to when I e-mail him from within my gmail acc't., which never seems to work).
Hope that helps, PS.
sgrandy
Posts: 63
Joined: Fri Sep 17, 2010 3:13 pm

Re: Measuring Surgical Success

Post by sgrandy »

I don't think it is really hard to understand, Celeste...I am obviously talking about people who have a similar type of pain but it is caused by something that will respond to conservative treatments and clearly not people who have an actual entrapment (since not *everyone* who visits these forums will necessarily have an entrapment, correct?). I also did not mean to suggest that surgery was the "thing" and I certainly understand that the people who go to surgery have run out of options to treat their pain.
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Charlie
Posts: 214
Joined: Fri Sep 17, 2010 11:48 pm

Re: Measuring Surgical Success

Post by Charlie »

sgrandy wrote:I don't think it is really hard to understand, Celeste...I am obviously talking about people who have a similar type of pain but it is caused by something that will respond to conservative treatments and clearly not people who have an actual entrapment (since not *everyone* who visits these forums will necessarily have an entrapment, correct?). I also did not mean to suggest that surgery was the "thing" and I certainly understand that the people who go to surgery have run out of options to treat their pain.
I think the question here though is what do we define as 'conservative' treatment? What we usually mean by this is myofascial physical therapy. Yet there is so little evidence that this is an effective treatment for pelvic pain. In fact a study presented in Chicago just last month showed that myofascial PT for Pelvic pain did not have a significantly greater affect than a regular full body massage for the symptom of pain as measured on the likert pain scale.

Sometimes I think 'conservative' treatment is a euphemism for unproven treatment. Certainly the arguments for 'trigger points' are incredibly controversial. I agree though that not everyone has an entrapment.
Last edited by Charlie on Sun Dec 26, 2010 9:05 pm, edited 1 time in total.
Tried numerous medications as well as a long period of myofascial physical therapy combined with meditation/relaxation. My pelvic floor muscles are now normal and relaxed on exam ( confirmed by many Pelvic floor PTs) yet my pain remains the same. Also have intense leg pain. Deciding on next treatment.
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Celeste
Posts: 574
Joined: Sat Sep 18, 2010 2:24 am
Location: central Ohio

Re: Measuring Surgical Success

Post by Celeste »

Charlie wrote:I think the question here though is what do we define as 'conservative' treatment? What we usually mean by this is myofascial physical therapy.
Medications, Botox injections, hyperavoidance of sitting and aggravating movements, seat cushions, meditation, prayer, herbal supplements, acupuncture, bee venom injections, heparin injections, B-vitamin injections, creams and suppositories, cold laser therapy, radiofrequency ablation, shock wave therapy, chiropractic manipulation, TENS units, neurostimulators, Ketamine infusions, epidurals, and steroidal nerve blocks.

Basically, if it's not nerve decompression surgery, people consider it to be conservative treatment since you can stop and/or reverse it.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.

I am cured. I hope you will be, too.

There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.

http://www.tipna.org
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Measuring Surgical Success

Post by Karyn »

Well said, Celeste! :)
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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Quilter 2
Posts: 163
Joined: Fri Sep 17, 2010 6:24 pm
Location: North East TN

Re: Measuring Surgical Success

Post by Quilter 2 »

Celeste & Karen
DITTO
Happy Holidays to all.
Doreen
Five pudendal nerve infiltrations with good results.
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
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