Surgery/treatment dilemma

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PN_down_under
Posts: 31
Joined: Sat Jun 11, 2011 6:26 am

Re: Surgery/treatment dilemma

Post by PN_down_under »

He explained it as injecting crystals (the steriod is suspended in liquid) into the scar fibre which will break or soften it up over time. I said, "so wont the scar just grow back even denser then??". He had no answer to that.
I am sceptical, because I thought it was purely just for inflammation, and his dismissal of the risks of doing an unguided injection into the area makes me nervous. Even if it did soften up scar tissue, it would have to do it right to the aggravating layer that comes into contact with the nerve. Impossible to do by 'stabbing in the dark'.

The problem is, if I turn around and say "no thanks", the doctor has no other options, and my wife thinks I am taking the word of random strangers on the internet against a Professor. She has not come to an realisation, like I and most here have, that most doctors are not geniuses, and that their knowledge is not absolute.

I don't know what to do!
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ezer
Posts: 689
Joined: Sun Sep 19, 2010 6:53 am

Re: Surgery/treatment dilemma

Post by ezer »

Both Dr.Weiss and Dr.Jordan told me that the steroid after it stops acting crystallizes and can in fact irritate the nerve some more long term. In fact Dr.Weiss had replaced the steroid by heparin for people that wanted multiple injections.
Sure we are total strangers and are not doctors but we also have no vested interest and we share valuable experience. Each case is unique of course but as it stands I would be better off today if I had not done any medical treatment apart from PT.
2002 PN pain started following a fall on a wet marble floor
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Surgery/treatment dilemma

Post by Karyn »

PN_down_under wrote: I don't know what to do!
I would listen to your gut on this one.
ezer wrote:Both Dr.Weiss and Dr.Jordan told me that the steroid after it stops acting crystallizes and can in fact irritate the nerve some more long term
This is correct. I can kind of understand why your MD wants to try the cortisone ... it does indeed eat away at soft tissues. Personally, I would feel uncomfortable with this procedure because of the injections being unguided, and in close proximity to the nerves.
PN_down_under wrote:his dismissal of the risks of doing an unguided injection into the area makes me nervous. Even if it did soften up scar tissue, it would have to do it right to the aggravating layer that comes into contact with the nerve. Impossible to do by 'stabbing in the dark'.
Has he informed you of how many procedures he's done of this nature and what the results were?
I understand your concerns about telling the doc "no thanks", when this is all he has to offer you. It's been my experience that some medical professionals will offer you a treatment, appropriate or not, just so they can say they've done something.
I'm really sorry you're feeling so poorly and wish you the best with your decision.
Kind regards,
Karyn
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.
flyer28
Posts: 244
Joined: Fri Mar 25, 2011 11:29 am

Re: Surgery/treatment dilemma

Post by flyer28 »

To Pn_down_under:
Did your pain meanwhile diminished? or still as bas as you wrote?
I heard from all sides that it is typical to have huge ups and downs after dorsal nerve decompression, even one year after operation. The nerve is still sensitive and even the slightest irritation might impose heavy flare-up.
How is your current MRI compared to that pre-operation one? Of course that it is not the final prove of succes/failure, but might help to see the difference.
Would you say that your operation made by dr.Aszmann is complete failure?
I am suffering with very similar pain more than 3 years, and although now I had lets say 4 months of improved condition, my status remain questionable. Pain is manageable but not cured.
Waiting to the new physiotherapy, then will decide, but probably no operation.
all the best
summer 2009 - episodic post ejaculatory pain,
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
merrie
Posts: 114
Joined: Wed Oct 27, 2010 10:32 pm

Re: Surgery/treatment dilemma

Post by merrie »

Dr Jordan uses Decadron instead of cortisone since its water soluable and does not crystalize. This could be an option.

Merrie
PNE onset 9/2008
Weekly pelvic floor PT since 9/2008
Numerous nerve blocks 2008 - current (pn, s2-s4 epidurals, pelvic/lumbar/splanchnic sympathetic)
PRF s2,3,4 May 2009
Numerous hip injections and trigger point injections
Numerous rounds of botox (first 12/08 - most recent 5/13)
Hibner consult / Kalinkin MRI 11/10
PT with PHRC in May 2013
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