I am seriously considering having the Genitofemoral, Illioinguinal and Illiohypogastric resected by Dr. Eckhauser at JHU. I've had inguinal to medial thigh pain and painful sitting for 5 years and Drs. have consistently come back to these nerves - although no nerve block has ever worked.
Has anyone on this forum had any or all of these resected? Please tell me how it went and the resulting sensations or lack there off?
I need help, pretty please.
Genitofemoral, Illioinguinal and Illiohypogastric resection
Re: Genitofemoral, Illioinguinal and Illiohypogastric resect
You could read the posts by acw or send her a PM -- she had one of those nerves cryoablated with good results.
Violet
Violet
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: Genitofemoral, Illioinguinal and Illiohypogastric resect
Hi dtroy,
I had an ilioinguinal & iliohypogastric neurectomy this past March. I did benefit from the surgery, but wish I could have had the genitofemoral done, too.
Unfortunately, Dr. Conway doesn't address that nerve. I no longer feel that "barbed razor wire" wrapped around the superior iliac crest and the insides of my hips/abdominal wall.
However, I do still have significant pain on both sides of the mons pubis and in the lower creases of my legs which radiates to the medial, anterior thighs. The superficial skin on the mons pubis is complete numb.
BUT ..... underneath the skin in that area is extremely painful. It's the most bizarre feeling! I have no idea why.
I wish you the best with your decision. It'll be interesting to compare notes, if you decide to proceed.
Kind regards,
Karyn
I had an ilioinguinal & iliohypogastric neurectomy this past March. I did benefit from the surgery, but wish I could have had the genitofemoral done, too.
Unfortunately, Dr. Conway doesn't address that nerve. I no longer feel that "barbed razor wire" wrapped around the superior iliac crest and the insides of my hips/abdominal wall.
However, I do still have significant pain on both sides of the mons pubis and in the lower creases of my legs which radiates to the medial, anterior thighs. The superficial skin on the mons pubis is complete numb.
BUT ..... underneath the skin in that area is extremely painful. It's the most bizarre feeling! I have no idea why.
Yeah .... same with me. I had a couple of rounds of ilioinguinal blocks and a lidocaine infusion with no results at all.dtroy wrote:Drs. have consistently come back to these nerves - although no nerve block has ever worked.
I wish you the best with your decision. It'll be interesting to compare notes, if you decide to proceed.
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.
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: Genitofemoral, Illioinguinal and Illiohypogastric resect
Karyn - thank you for this thoughtful response. I just went back to the Dr. and asked if I could take genitofemoral out of the resection, and he would just do illioinguinal and illiohypogastric. I have searing pain in my inner medial thigh that spreads when I sit. Can you describe the resulting numbness as a result of this surgery? Dr. Eckhauser at JHU said he'd go in at my Psoas where he could get access to the main nerves as they leave the spine (laymen terms). I'm concerned that I'm going to have numbness into my genitals - to be very direct.
Re: Genitofemoral, Illioinguinal and Illiohypogastric resect
Hi dtroy,
The numbness is I have is on the skin of the pubic bone only. It doesn't spread to my genitals.
The numbness is I have is on the skin of the pubic bone only. It doesn't spread to my genitals.
Do you mean the creases of your legs (in the front) and goes into medial thigh? That's where I still have the searing pain. That's why I wish I could've had the genitofemoral done, too.dtroy wrote: I have searing pain in my inner medial thigh that spreads when I sit.
Hmmmm .... My incisions are about 3" long and travel on a diagnal on the inside of my hips to the top of the pubic bone (ischium?).dtroy wrote: Dr. Eckhauser at JHU said he'd go in at my Psoas where he could get access to the main nerves as they leave the spine
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: Genitofemoral, Illioinguinal and Illiohypogastric resect
Inner thigh pain could be due to OI muscle in spasm. I used to have that before PNE surgery.dtroy wrote: I have searing pain in my inner medial thigh that spreads when I sit.
Violet
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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Re: Genitofemoral, Illioinguinal and Illiohypogastric resect
I haven't been on here for quite a while and am just now seeing this. I had the genitofemoral, ilioinguinal & iliohypogastric neurolyses on both sides, one side at a time, in Aug 2011 & Sept 2011. I recovered very well and without incident and got the relief that was expected. Now why can't the pudendal nerve be so easy!?
Best wishes,
Grace
Best wishes,
Grace
Woke screaming from ab hyst 6/08
Diagnosed w/PN, ilioinguinal & iliohypogastric neuralgias 1/09
3 PN blocks w/Dr Quesada
Rt side TIR, ilioinguinal neurectomy & vestibulectomy 5/09 Dr Conway
Left side TIR 2/10 Dr Conway
Potter MRI 9/10 and consultation w/Loretta & Dr Hibner 12/10
Bilateral ilioinguinal, iliohypogastric, genitofemoral release w/Dr. Hashemi Aug 2011 left & Sept rt
Bilateral TG surgery w/Dr. Conway will be in January 2012
Diagnosed w/PN, ilioinguinal & iliohypogastric neuralgias 1/09
3 PN blocks w/Dr Quesada
Rt side TIR, ilioinguinal neurectomy & vestibulectomy 5/09 Dr Conway
Left side TIR 2/10 Dr Conway
Potter MRI 9/10 and consultation w/Loretta & Dr Hibner 12/10
Bilateral ilioinguinal, iliohypogastric, genitofemoral release w/Dr. Hashemi Aug 2011 left & Sept rt
Bilateral TG surgery w/Dr. Conway will be in January 2012