Surgery in Houston
Re: Surgery in Houston
Does anyone know if Dr. Marvel performs PN decompression surgery? I thought Dr. Conway told me he does the modified TG approach.
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.
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.
Re: Surgery in Houston
Karyn, Dr. Marvel does PNE decompression surgery using the TG approach but I'm not sure which TG method he uses.
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.
Re: Surgery in Houston
Karyn, I remember from the old forum someone went to him but didn't improve and I think had something bad happen to them but can't recall what... and I concluded he is no Marvel. But that was just one person...
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
Re: Surgery in Houston
Dr. Bautrant told me that the ST ligament doesn't compress the nerve, but doctors cut it open just to visualize the nerve. Rather, the SS ligament is the one that provides the compression and the pull when you sit. The ST is just in the way of the surgical procedure's visualization process. Thus, the ST does not need to be cut to free the nerve, whereas usually the SS does need to be cut. Therefore, windowing the ST ligament via Antolak or Conway's new approach, assuming they do things correctly, could be fine and the nerve could still be freed as long as the SS ligament is cut through or partially cut where it is calcified. Make sense?To be honest I don't really understand how they are doing this. If the nerve is compressed by the ligaments how is it possible to free them without cutting them completely and just making a small slice in the ligaments? I am not saying they are doing anything wrong I just don't understand how they are doing it.
What I will say if you do have an entrapment at the ligament you have to do something to the ligaments to relieve the compression on the nerve.
I think what you're saying here, Charlie, is that by doing the decompression through the ST ligament in order to preserve it entirely, the nerve is decompressed from any tethering or fibrotic/scar tissue that may be around the nerve. But, if the compression was due to the mechanical action of one or both ligaments physically pressing down on them, they'll still remain. Correct? If transposition of the nerve is still done, then you're hoping that this plus the surgical decompressing was enough.
Put your index fingers together and make a T so your insides of your fingers are touching. That's your nerve against the SS ligament. There's no tension when you're standing. Now pull the fingers together against each other. That's what happens when you sit. Now imagine the lower one being cut through thoroughly. That's the SS ligament being freed, so when you pull your fingers, nothing tugs on the nerve. Now imagine above those fingers, place your thumb there. That's the ST ligament. It's just in the way of seeing them, but when you pull the fingers together, the thumb does not pull anything. It's just there.
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
-
- Posts: 297
- Joined: Fri Sep 17, 2010 3:56 pm
- Location: Toronto
Re: Surgery in Houston
Whoo...quite the heated thread I missed while I was away! Believe the sentiment's already been stated...PNE's already enough of an adversary for us to be getting caught up fighting each other like this! (I'm all for respectful debate, but c'mon now!!)
The only person doing it, as far as I know, is Dr. Beco in Belgium, who was directly mentored by Shafik (who passed away a few years ago). And I think there's one other guy in Switzerland, but haven't really heard anything about him (can't even remember his name actually).grerichm wrote:do you know who does that approach, other than dr marvel?
Re: Surgery in Houston
I believe that was Dr. Spinoza, but I don't know of any forum members who have had treatment with him.Pelvis Stressly wrote: And I think there's one other guy in Switzerland, but haven't really heard anything about him (can't even remember his name actually).
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
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
Re: Surgery in Houston
Hello pianogal, Not sure I understand above in bold? Thought mine looked fairly attached (or adheared to) to the STL material.pianogal wrote:Dr. Bautrant told me that the ST ligament doesn't compress the nerve, but doctors cut it open just to visualize the nerve. Rather, the SS ligament is the one that provides the compression and the pull when you sit. The ST is just in the way of the surgical procedure's visualization process. Thus, the ST does not need to be cut to free the nerve, whereas usually the SS does need to be cut. Therefore, windowing the ST ligament via Antolak or Conway's new approach, assuming they do things correctly, could be fine and the nerve could still be freed as long as the SS ligament is cut through or partially cut where it is calcified. Make sense?.
RR
Cyclist till perineal pain onset R side (Apr'08). Dx with PN (Aug'09). Lyrica gave 30% pain reduction. Potter MRI (Oct'10) validated at surgery with Dr Hibner (Nov'10) - found nerve attached to scarred STL. Now sitting 10 hrs/day vs 1 hr/day pre-op. Surgery video = http://www.youtube.com/watch?v=6FDwana6SQU
Deep neuropathic burning pain flares have been gone since surgery...Grateful to Dr Hibner.
Deep neuropathic burning pain flares have been gone since surgery...Grateful to Dr Hibner.
Re: Surgery in Houston
If there are adhesions gluing the nerve to the ST ligament, then yes, they need to be separated. However, unless the nerve is growing through the middle of the ST ligament anatomically through some abnormality, you could technically release that adhesion without cutting through the ST ligament. The ST ligament doesn't compress the nerve, the SS one does... however, if the nerve is glued to either ligament, obviously the nerve needs to be separated from that adhesion. Cutting a ligament is not necessary to release that adhesion. Does that make more sense? Mechanically, the only ligament that compresses is the SS ligament via the body mechanics as the pelvis changes from standing to seated. During the movement from standing to seated, the ST ligament lies behind the nerve and doesn't have a way to compress it at all. The only reason it is cut is for visualization purposes.Hello pianogal, Not sure I understand above in bold? Thought mine looked fairly attached (or adheared to) to the STL material.
RR
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
Re: Surgery in Houston
PG, this was back when Dr. Marvel was doing the TIR approach that someone had gotten worse. Marvel then switched to the TG approach which he learned from Dr. James Campbell at Hopkins. Since he started doing the TG I've only heard one person report and they had a good experience and were improving the last time they posted.pianogal wrote:Karyn, I remember from the old forum someone went to him but didn't improve and I think had something bad happen to them but can't recall what... and I concluded he is no Marvel. But that was just one person...
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.
Re: Surgery in Houston
Thanks for the explanation Piano Girl. My only query is does n't 'windowing' just mean cutting through the ligaments?pianogal wrote:Dr. Bautrant told me that the ST ligament doesn't compress the nerve, but doctors cut it open just to visualize the nerve. Rather, the SS ligament is the one that provides the compression and the pull when you sit. The ST is just in the way of the surgical procedure's visualization process. Thus, the ST does not need to be cut to free the nerve, whereas usually the SS does need to be cut. Therefore, windowing the ST ligament via Antolak or Conway's new approach, assuming they do things correctly, could be fine and the nerve could still be freed as long as the SS ligament is cut through or partially cut where it is calcified. Make sense?To be honest I don't really understand how they are doing this. If the nerve is compressed by the ligaments how is it possible to free them without cutting them completely and just making a small slice in the ligaments? I am not saying they are doing anything wrong I just don't understand how they are doing it.
What I will say if you do have an entrapment at the ligament you have to do something to the ligaments to relieve the compression on the nerve.
I think what you're saying here, Charlie, is that by doing the decompression through the ST ligament in order to preserve it entirely, the nerve is decompressed from any tethering or fibrotic/scar tissue that may be around the nerve. But, if the compression was due to the mechanical action of one or both ligaments physically pressing down on them, they'll still remain. Correct? If transposition of the nerve is still done, then you're hoping that this plus the surgical decompressing was enough.
Put your index fingers together and make a T so your insides of your fingers are touching. That's your nerve against the SS ligament. There's no tension when you're standing. Now pull the fingers together against each other. That's what happens when you sit. Now imagine the lower one being cut through thoroughly. That's the SS ligament being freed, so when you pull your fingers, nothing tugs on the nerve. Now imagine above those fingers, place your thumb there. That's the ST ligament. It's just in the way of seeing them, but when you pull the fingers together, the thumb does not pull anything. It's just there.
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.