Hi I am mahzi and live in India. I have decompresion surgery done in france by Dr. Eric Bautrant. I had left pudendal pain and after surgery was pain free for 5 years except for small bouts which would happen if i overstrained but would settle in a few days by taking diazepam 5mg. However now my pain has returned in a big way especially in the anal canal.I have been given Lyrica 75mg and diazepam 5mg by my doctor. Lyrica a low dose is given to me as i am allergic to these drugs. My neurologist told me htat PNE CAN COME BACK has any body had a reoccurance. I also have lower back scolosis on the left side where i have my Pne pain but was told scolosis cannot cause PNE. Please let me know if any body has had a reoccurance i am hoping this is just a bout .
Regards Mahzi
PNE pain returns after 5 yrs of surgery
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helenlegs 11
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Re: PNE pain returns after 5 yrs of surgery
Hi Mahzi,
Welcome, glad you found us here
. I hope that your symptoms are just a bout too. It does seem a long time between your pain symptoms to be a build up of scar tissue that I know others have had and therefore have suffered recurrence of pain.
I hope others will add their own comments and give some help. I haven't had the first surgery yet so have no personal experience, sorry.
Take care,
Helen
Welcome, glad you found us here
. I hope that your symptoms are just a bout too. It does seem a long time between your pain symptoms to be a build up of scar tissue that I know others have had and therefore have suffered recurrence of pain.I hope others will add their own comments and give some help. I haven't had the first surgery yet so have no personal experience, sorry.
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: PNE pain returns after 5 yrs of surgery
Hi Mahzi
It would seem that a problem with the PN can recur. I had bilateral decompression surgery with Pr Roberts in Nantes in 2007. The sharp, stabbing pains all disappeared after the the op. I coped well with the residual pain with the use of a tens machine which enabled me to sit and drive. I went to Nantes 4 times post surgery for nerve blocks. However, 3 weeks ago I started to experience the deep stabbing pain in the perineum again. I cannot sit at the moment and even if I stand for more than 15mins, I can feel the pain coming on. I'm in need of a complete re-assessment. I found the experiences shared on this site by patients to be very informative and helpful. I'm presently awaiting for an appointment with Dr Hibner. As soon as I get that, I would schedule an appointment with Dr Potter to do the 3T MRI on my way to DR Hibner.
I live in South Africa and its a long journey to USA - 17 hrs to NYC alone! I have no option because in South Africa there isn't anybody who has venture into giving even pudendal nerve blocks! I'm worried about scar tissue and whether this can be removed if it's the source of the problem.
Take care and God bless
Linkey
It would seem that a problem with the PN can recur. I had bilateral decompression surgery with Pr Roberts in Nantes in 2007. The sharp, stabbing pains all disappeared after the the op. I coped well with the residual pain with the use of a tens machine which enabled me to sit and drive. I went to Nantes 4 times post surgery for nerve blocks. However, 3 weeks ago I started to experience the deep stabbing pain in the perineum again. I cannot sit at the moment and even if I stand for more than 15mins, I can feel the pain coming on. I'm in need of a complete re-assessment. I found the experiences shared on this site by patients to be very informative and helpful. I'm presently awaiting for an appointment with Dr Hibner. As soon as I get that, I would schedule an appointment with Dr Potter to do the 3T MRI on my way to DR Hibner.
I live in South Africa and its a long journey to USA - 17 hrs to NYC alone! I have no option because in South Africa there isn't anybody who has venture into giving even pudendal nerve blocks! I'm worried about scar tissue and whether this can be removed if it's the source of the problem.
Take care and God bless
Linkey
Re: PNE pain returns after 5 yrs of surgery
Hi Linky
It s eems you and I you and i have the same problems . In India there is nobody who can really help except give medication. at least you can keep going to the Usa i cant afford it. let me know what they say to you in the usa. All the best. Unfortunately i am also very allergic to all the drugs like Lyrica nad neurotin so have to take it forawhile and then stop which gives me more flare ups, Please let me know what they say in the Usa about resurgery.
Regards mahzi
It s eems you and I you and i have the same problems . In India there is nobody who can really help except give medication. at least you can keep going to the Usa i cant afford it. let me know what they say to you in the usa. All the best. Unfortunately i am also very allergic to all the drugs like Lyrica nad neurotin so have to take it forawhile and then stop which gives me more flare ups, Please let me know what they say in the Usa about resurgery.
Regards mahzi
Re: PNE pain returns after 5 yrs of surgery
Linkey,
As far as we know, Dr. Hibner is the only surgeon who does redos in the US. Unfortunately, appts. with him are usually six months wait and then wait 6-9 mos. after that for surgery. He may want you to do botox while you are there. He only does one PN surgery per week on Mondays.
Don
As far as we know, Dr. Hibner is the only surgeon who does redos in the US. Unfortunately, appts. with him are usually six months wait and then wait 6-9 mos. after that for surgery. He may want you to do botox while you are there. He only does one PN surgery per week on Mondays.
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: PNE pain returns after 5 yrs of surgery
Hi linky
Have you tried taking neurotin I have been put on it 300mg three times daily and found some relief my doctor said it takes 3 weeks to get total relief. Lyrica did not give me any relief When i had this problem in the beginning i had 3 nerve blocks in belgium with a gap of 4 months each and got total relief for 2 yrs. they were steroid ct guided nerve blocks. I cant understand how some people write they only geet relief for few hours or days. how long did you get relief from your neve blocks would really like to know
regard mahzi
Have you tried taking neurotin I have been put on it 300mg three times daily and found some relief my doctor said it takes 3 weeks to get total relief. Lyrica did not give me any relief When i had this problem in the beginning i had 3 nerve blocks in belgium with a gap of 4 months each and got total relief for 2 yrs. they were steroid ct guided nerve blocks. I cant understand how some people write they only geet relief for few hours or days. how long did you get relief from your neve blocks would really like to know
regard mahzi
CT guided nerve blocks
I had 3 nerve block in begium when i first had this problem . They were steroid and ct guided with a gap of 4 months each and got total relief for 2 yrs, i canr understand why some people get only a couple of hours relief or few days.
Regards mahzi
Regards mahzi
Re: PNE pain returns after 5 yrs of surgery
Mahzi, I am sure it is because our situations are all different, that's why some get long term relief with nerve blocks and some only get a few hours.