I'm back :(

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alex_storm
Posts: 9
Joined: Wed Feb 15, 2012 6:19 pm

I'm back :(

Post by alex_storm »

Hi
I had my surgery in 07/2006 with doc Robert in Nantes france. After that i had no pain, i considered myself cured, i was happy having a normal life during these last years, but now i'm back with the same pudendal nerve pain and i'm looking for help.

As I said everything was ok until 3 weeks ago when all the pudendal symptons restarted. Now i'm trying to figure out what happened to cause this problem again and i need you guys opinion. here is the cronology:

- 07/2006 - surgery
- 01/2007 - i'm back to my job (i was a computer programmer, working sitted)
- 03/2008 - i found another job which i dont need to stay sitted for so long
- 08/2011 - i started to play soccer again, something i havent done since 2005(when pain started)
- 11/2011 - i moved to another city, to the 4th floor of an old building that doesnt have elevator, i have to use stairs since then(i've never had to use stairs where i lived before), i had to lift up my things (furniture,etc.) to the 4th floor , i stopped playing soccer and started to run only
- 12/2011 -i found a girlfriend and started to have sex again(unprotected sex), i used viagra/cialis all the time
- 01/2012 - suddenly, after a night of sex in the morning after, i noticed a pain in my groin, like a needle but i didnt pay much attention, but the pain then became strong during that month, i noticed i started to have pain again (classic pudendal pain) when sitting and since then it became worse
- 02/2012 - now things are getting worse day by day, i started acupuncture treatment(with no much improvement) , stopped running, stopped with the sex/masturbation, no sitting, trying to avoid to use the stairs, anyway, i'm back to the nightmare.


1 - what could have been the reason of my pudendal pain came back so suddenly? more frequent sex? the use of viagra? unprotected sex? my change to this building? the use of stairs?

2 - is it possible to the nerve get entraped again or it can just be a irritation and things will get better ?

thanks

______________________________

here is my surgery report:



---------------------------------------------------------------------------
Bilateral freeing and transposition of the pudendal
nerve.

Indication:

Patient presenting bilateral pain that might be caused by a pudendal nerve
pain. We decide to operate.


Technique and surgical findings:

Under general anaesthesia, patient laying on the front, thighs flexed 90
degree on the pelvis, right gluteus incision from a transverse starting
from the top of the coccyx and oriented toward the fibres of the gluteus
maximus.

Dissection of the latter (the gluteus maximus) which is thick. We
see the sacrotuberous ligament which is very large and furrow with vessels
that we need to coagulate.

Resection of this ligament in it's shrunk part. The ligament is not thick.
The pudendal nerve appears. It is in fact caught in a split of the
sacrotuberous ligament located very medially(1). We free the pudendal nerve
from this ligament split and scatter it from the posterior face of the
sacro-spinous ligament to move it laterally.

Then there is a little falciform process (2) that entrap the nerve.
The nerve is very shrunk everywhere so there is really a conflict. Section
of the sacrospinous. Coagulation of the numerous branches of the internal
obturator nerves (3). Transposition of the nerve in front of the ischial
spine. Closure layer by layer according to the usual technique, without
drainage.

We operate on the left with a symmetrical incision where we are
making worse observations. On this side indeed, the nerve is caught in the
ligamentary grip (4) very shrunk with an adipose degenerative look. It is
also entrap by the falciform process which is narrow but very tense. The
nerve is laminated everywhere. We isolate a unique branch of the obturator
internus nerve that we coagulate and severe (3). Section of the
sacrospinous ligament and transposition of the nerve in front of the ischial
spine. Closure layer by layer according to the usual technique, without
drainage.

---------------------------------------------------------------------------
(1) Medially: more toward the center of the pelvis. The opposite is
"Laterally".
(2) Falciform process: A continuation of the inner border of the
sacrotuberous ligament upward and forward on the inner aspect of the ramus
of the ischium.
(3)Your internal obturator muscle is not innervated anymore. So it can't
contract and will not hurt your pudendal nerve. This is a new method that
Pr. Robert have been using for 6 months.
(4) Ligamentary grip : The grip made of the sacrospinous and the
sacrotuberous ligaments.
AliPasha1
Posts: 739
Joined: Fri Sep 17, 2010 2:35 pm
Location: New Orleans,Louisiana

Re: I'm back :(

Post by AliPasha1 »

Hi Alex,

I am sorry to hear that your pain has returned which is very unfortunate.However,the writing was on the wall when you started playing soccer and climbing up the stairs.Since both your ligaments have been severed or partially cut,you developed Pelvic weakness or Pelvic instability which became apparent after normal activities like climbing stairs or playing soccer.

Probably, your hip got rotated or your PN got re-entrapped in scar tissue after your activities.

Although, Professor Roger Robert along with the Houston team will deny that the ligaments have any impact on pelvic stability and they will give you examples of cadavers but unfortunately cadavers can't feel pain.

I don't know how many patients will continue to suffer because of the severed ligaments.

As mentioned,the second possibility is that your PN got re-entrapped in scar tissue because of the invasive nature of the TG surgery which leaves massive amount of scar tissue.

The best person to answer your question is Professor Roger Robert himself because at the end he is responsible for the results as well as post surgical complications.

PS

Secondly,it seems that your ED issues never got fixed in the first place since you were still taking viagra.

Regards,
Ali
Last edited by AliPasha1 on Sat Feb 25, 2012 7:51 pm, edited 1 time in total.
Diagnosed for PNE by Dr. Jerome Weiss in June 2007.Started PT with Amy Stein in NYC.
PT for almost 3 years now without any results.
Pudendal Nerve blocks in August,2007 by Dr. Quesda left me with sitting pain.
Unilateral TIR approach with Dr. Bautrant on 18 Febuary,2010 with no major improvements and sitting is much worse.
MRI By Dr. Potter reveals nerve entrapment in the ST,AC and DN.
Dorsal Nerve Decompression surgery on April 8,2011
Redo surgery by Dr. Hibner on July 18,2011
alex_storm
Posts: 9
Joined: Wed Feb 15, 2012 6:19 pm

Re: I'm back :(

Post by alex_storm »

thanks for the answer Ali

hip rotation can be a cause of pudendal nerve entrapment?
alex_storm
Posts: 9
Joined: Wed Feb 15, 2012 6:19 pm

Re: I'm back :(

Post by alex_storm »

another question

how climbing stairs can hurt the nerve?
by piriform or another muscle overuse ?
AliPasha1
Posts: 739
Joined: Fri Sep 17, 2010 2:35 pm
Location: New Orleans,Louisiana

Re: I'm back :(

Post by AliPasha1 »

Hi Alex,

If your Pelvis or hip is rotated your muscles put pressure on the nerve and it causes pain.However,it could be SIJD(Sacro-illiac joint dysfunction) which you developed after your PN surgery and it came into light after your started climbing stairs and exercising.

You are lucky that you saw this issue after six years.Most people that I know developed within a year or two after their ligaments were severed.

The whole point is that your ligaments support the Sacrum/ilium and without them your Pelvis goes out of alignment.Since your Pelvis is out of alignment and out of it's original position,different forces are putting pressure on the nerve.

It's also possible that your PN got re-entrapped in scar tissue.

If you have sciatic issues, you might have piriformis muscle syndrome.

I think that you need to contact Professor Roger Robert or Dr. Hibner for a redo surgery.You can also see Dr. Potter for an MRi to see what's going on.


Regards,
Ali
Last edited by AliPasha1 on Sat Feb 25, 2012 7:50 pm, edited 4 times in total.
Diagnosed for PNE by Dr. Jerome Weiss in June 2007.Started PT with Amy Stein in NYC.
PT for almost 3 years now without any results.
Pudendal Nerve blocks in August,2007 by Dr. Quesda left me with sitting pain.
Unilateral TIR approach with Dr. Bautrant on 18 Febuary,2010 with no major improvements and sitting is much worse.
MRI By Dr. Potter reveals nerve entrapment in the ST,AC and DN.
Dorsal Nerve Decompression surgery on April 8,2011
Redo surgery by Dr. Hibner on July 18,2011
Stephanie P
Posts: 74
Joined: Mon Oct 11, 2010 10:06 am

Re: I'm back :(

Post by Stephanie P »

Hi Alex,
Here's my two cents' worth. According to your operation report, your nerve was very compromised, especially on the left side. Your rapid recovery, therefore, given your nerve's vulnerability, seems remarkable. Perhaps your apparent recovery lulled you into a false sense of security and too much activity causing you to stress and inflame the nerve into a flare. Maybe, for now, it's had enough and you need to treat it gently and rest it (no sitting, no sports, etc). I experienced something similar about 3 years post op (except that I hadn't made the recovery you had). And no, I hadn't developed any SIJD issues.
Pudendal neuralgia, diagosed as ischial bursitis, from 1985. Worsened by fall in 2003. Bilateral TG surgery in Nantes 2004. Nerve flattened both sides. No improvement, still cannot sit.
carolynm
Posts: 465
Joined: Fri Jul 22, 2011 4:25 am
Location: CO

Re: I'm back :(

Post by carolynm »

Alex,

A good manual PT should be able to check your pelvic alignment to see if there is sacral torsion or SIJD. This can be caused by rotation of the ilium, which pulls on the ligaments, which irritates the nerve, etc. I would try this conservative route on your journey to finding answers.

Best of luck
cari
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
alex_storm
Posts: 9
Joined: Wed Feb 15, 2012 6:19 pm

Re: I'm back :(

Post by alex_storm »

thank u all for the answers


is there any chance to the obturator internus muscle get reinnervated again?



thanks
alex_storm
Posts: 9
Joined: Wed Feb 15, 2012 6:19 pm

Re: I'm back :(

Post by alex_storm »

BTW
i had a MRI last week
and the report says I have tendinopathy in adductor magnus near the pubic sinphisis

does it mean anything to pudendal pain??
User avatar
Violet M
Posts: 6577
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: I'm back :(

Post by Violet M »

I suppose possibly if the tendonitis were to set up a cycle of pain causing your muscles to be in spasm and irritate the PN -- but I think that's a long shot.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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