Hey everyone,
If you are lurking on here, please do us a favor and post, especially if you are post-op. We want to know how you are doing. Okay, I WANT TO KNOW how you are doing. We have to teach and help the doctors here. I am 6 months post op left sided TG w/ Hibner. I am improving. I am better than I was before the surgery on the operated side. As it stands right now, I have to have another surgery for my other side.
Please post. If Hibner does one PNE a week, where is everyone? I've only heard of me, RJR, and TinyDancer.
A's Mommy
PS : Patients of other surgeons too, please post.
Where are the post-ops?
Where are the post-ops?
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
Re: Where are the post-ops?
Hi AM!
At only 5 weeks out of surgery, I'm holding out for another few weeks for the update. Glad to hear your improving and doing better than before surgery!
Love,
Karyn
At only 5 weeks out of surgery, I'm holding out for another few weeks for the update. Glad to hear your improving and doing better than before surgery!
Love,
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: Where are the post-ops?
Great news about you doing better, AM, I am so happy for you and hope it will continue! 
Maybe some day I will be able to say the same for myself
Maybe some day I will be able to say the same for myself
Diagnosed with left side PN by Dr Renney, March 2010, after over 2 years of searching for help
Left TG Surgery, Dr Ansell, August 2010, failed to relieve pain
Left TG Surgery, Dr Ansell, August 2010, failed to relieve pain
Re: Where are the post-ops?
I am 9+ months post op bi-lateral decompression surgery and still in quite a bit of pain. My pain up to about 9 months post op was worse than the pain pre-surgery. I am now feeling small improvements, due to perhaps three factors; 1)PT with a pelvic floor specialist, 2) 600 Mg's of Lyrica per day, 3) Time. It has been a very long 9 months, would love to hear from other post op patients to get a perspective on whether my recovery is normal, slow or non-existant. Gregg
Bi-lateral pudendal decompression surgery September 2010, Dr. Antolak. 54 years old, had radical prostatectomy in 2007 which may have contributed to this pain. Former runner, weight lifter etc. 10 months post op, very little improvement able to walk 15 minutes a day, little to no sitting
Re: Where are the post-ops?
After having to stop Lyrica due to extreme side effects, I am doing much worse. Sorry to report bad news.
When my distal alcocks and/or perineal branches are sufficiently addressed, I'm sure I will be much better. Until then, my plan is to stay alive.
AM
When my distal alcocks and/or perineal branches are sufficiently addressed, I'm sure I will be much better. Until then, my plan is to stay alive.
AM
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
Re: Where are the post-ops?
AM, I am really sorry to hear you are still having such a rough time and I hope whatever treatment you are pursuing will end up being the right answer for you. My prayers are with you.
Hugs,
Violet
Hugs,
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: Where are the post-ops?
AM,
It's hard to post when you're not feeling better but like you said we all need to hear bad news as well as good news. Sometimes recovery is measured in years instead of months. Anything is possible. Keep the faith. We are all rooting for you.
All My Best,
Don
It's hard to post when you're not feeling better but like you said we all need to hear bad news as well as good news. Sometimes recovery is measured in years instead of months. Anything is possible. Keep the faith. We are all rooting for you.
All My Best,
Don
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
Re: Where are the post-ops?
Hi everyone,
I am just over 2 months after my May 9 left TG surgery by Dr Marvel. Hard to say but I think after more time it will be better than before. Before I could sit at least 1/2hour or more and work 5 hours per day. I am only up to 15-20 minutes sitting and am waiting before returning to work if my Family Leave Medical Act paperwork gets approved next week (that should also alloow me to gradually retirn by working my way up in time spent at work).
Janet
I am just over 2 months after my May 9 left TG surgery by Dr Marvel. Hard to say but I think after more time it will be better than before. Before I could sit at least 1/2hour or more and work 5 hours per day. I am only up to 15-20 minutes sitting and am waiting before returning to work if my Family Leave Medical Act paperwork gets approved next week (that should also alloow me to gradually retirn by working my way up in time spent at work).
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
Re: Where are the post-ops?
AM, sending lots of hugs your way. (((((((hugs))))))))))) Thank you for your honesty.A's Mommy wrote:After having to stop Lyrica due to extreme side effects, I am doing much worse. Sorry to report bad news.
When my distal alcocks and/or perineal branches are sufficiently addressed, I'm sure I will be much better. Until then, my plan is to stay alive.
AM
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
Re: Where are the post-ops?
How is A's Mommy doing? I have been following her posts and am wondering how things are going.
cari
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)
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)