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Please note that any comments expressed in these forum posts do not reflect the opinions of Medical News Today in any way at all. Opinions posted in this forum do not constitute medical
advice, which should be sought from qualified medical advisers. Disclaimer.
Pudendal Nerve Entrapment Surgery
posted by Anon on 03 Dec 2006 at 3:29 pm
Great Article that Ms. Violet wrote. I recently had this surgery and am a sufferer for the past 7 years. I wish there were more info on post-op care. The doctor that did my surgery has done nothing to answer any questions that we have called into the office about . No return phone calls! No post op care!!
Is there someone that I would be able to speak to about this and the problems that I have been experiencing. The doctor did advise my husband to go to the PNE website and I could get my answers off the internet. I have never heard such a thing before and being treated like this.
My questions pertain to me and are not just a generic question. I wished the medical association was more educated on this severe problem and maybe patients would not have to suffer as long as I and others have had too. and also wish my attending physician took better care of his patients for aftercare. Thank you!
Read the news article that this opinion was posted about:
Taking The Shame Out Of Pudendal Neuralgia
Skepical
posted by Sharon A Hegarty on 06 Feb 2007 at 1:35 am
Hello Violet
My name is Sharon and I live in Australia. From what I have read on the internet about this surgery makes me very skeptical. I agree with you about follow up, I would like to know if your pain has got any better since the surgery.
I suffer badly from this and have just come back from seeing the best pain specialist in Australia. I am no better off and I feel maybe he thinks it is in my head.
I am bed-ridden or spend hours daily on the toilet for pain relief. I have no life at all. Would you reccommend the surgery, I wish you well and hope you get some relief.
Regards Sharon
I Cant Take This Pain Anymore
posted by Madi on 30 Mar 2007 at 6:42 pm
hi friends
I hope any of you could help me i have PNE and whenever i go doctors they think im bozo they tell me nothings wrong it's the same with you guys because of this case i feel like life is of no worth if you know good doctors and their adresses please post it.
Had Surgery 6 Weeks Ago
posted by Sunny on 12 Apr 2007 at 11:59 am
I suffered with terrible pelvic pain for 3 years before a physical therapist named my illness. My neurosurgeons and other doctors did not know why I was suffering. My pudendal nerves were trapped between the sacrospinous and sacrotuberous ligaments.
My surgery went very well according to my pudendal surgery Doctor. I know I needed the surgery because when the Dr. saw the nerves they were severely trapped. The right side between ligaments and the left side between fat and ligaments.
I am home recovering and you never know from day to day how much pain relief you will have. The nerves will heal slowly. I over-did it on Easter and ached until Thursday.
Please keep the faith everyone. I know what you are going through, and I wish more Doctors were trained to help us.
I Had Surgery From 3 Months Ago
posted by lilo on 13 May 2007 at 7:26 am
Hello friends...
I suffered from pudendal nerve entrapment for 2 years and then I had from 3 months ago the operation in France , (par voie trans-fessier)
Till now I am so ameliorated (70 % amelioration).
My life is good now, and here is the text of the operation :
Un ligament sacro-tuberal epaissie , on reseque ce ligament , on tombe sur un paquet pudendal entoure par une fibrose , dans le canal sous-piriforme le nerf est blinde , on le liberera , on reseque le sacro-epineux et transposition du nerf .
Gauche comme a droite .
Bon courage.
Help Needed
posted by nancy mobley on 28 May 2007 at 9:26 am
I would like to know who did the operation onl "lilo" in France and at what hospistal. I have been diagnosed with the PNE and am hoping the injections will help, but need all the info I can find.
Advice
posted by Dave on 30 May 2007 at 3:33 pm
You may have already tried this but before you look at the surgery option buy a book called Headache in the pelvis. You can purchase it on Amazon. It describes how pelvic pain is often caused by tight and constricted pelvic floor muscles. This can be treated by physio therapy.
Could I Have A Misdiagnosis
posted by anon on 01 Jun 2007 at 11:33 am
I am currently being treated for an impinged pudendal nerve. The pain
started 3 months ago in my groin following passing a kidney stone.
The urologist did not feel it was kidney related after many tests. Next I
saw a second opinion doctor who suspected an impinged pudendal
nerve. I have been on neurontin ever since with about 80% pain relief.
However, the pain and discomfort is not in my groin, etc., but instead
in my lower leg. Would anyone venture an opinion on this?
Shoud I Have Surgery
posted by Joan Flyte on 26 Jun 2007 at 6:18 am
I have been suffering from IC and vulvodynia for three years. I've had every treatment and medication and no relief. I discovered a doctor in maryland that has trained in France for pudendal nerve surgery. HE is confident he can help me, but I read about all the reasons not to have the surgery. My gyno isn't for the surgery, but I have no quality of life at all. My life is ruined through these day diseases. help!
Operation In France From 6 Months
posted by lilo on 21 July 2007 at 4:28 pm
After 6 months from the operation I feel good, amelioration (70 %). I don't feel burning, I am healthy and ok,
I don't take medications, only the trans-gluteal (trans-fessier) approach described by Robert is efficient because he can liberate the nerve under the piriforme until the alcock's canal , the transperineal approach by shafik et al and beco is not efficient because he cannot enter deeply ( piriforme , sacrospinous , sacrotuberous ligament ...) ,
The operation actually is a little bit hard because it requires skills and knowledge in the region of the operation, 3 days in hospital, about 3 hours the operation in both sides (each side 1.5 hours),
Remember that nerve decompression pudendal is an effective treatment and the ONLY way the treat the defect.
Take care.
Tarlov Cyst Problem
posted by Dot on 17 Sept 2007 at 12:27 pm
Hi
I have a problem a bit like yours and I have been diagonised with a spinal cyst. Through info on internet I have discovered that cyst may be pressing or entraping P. nerve. Hope you have got some relief as I am still waiting on appointments and can't sit down for only a few minutes.
There Is Hope
posted by Judy on 06 Nov 2007 at 1:41 pm
To everyone here,
I had decompression surgery in Houston, Tx. in Feb. '06. It has been a long recovery but it sure beats just lying in bed and crying, wondering if the doctors are right and it is all in the head. I am very thankful for the expertise of my surgeon and his team. It's true, there seems to be no after-care at all, which can be quite a challenge. That's one reason I am so glad to find this site. Please let me know if I can help. I have a few questions of my own and would be glad to try to answer some as well. Thank you. Judy
My Experiences
posted by j on 10 Dec 2007 at 3:36 am
I suffered with pne for 2 years and was only getting worse with each day. Finally, out what was wrong I had the surgery in Belgium by Dr. Beco and some follow up PT. I have seen a great deal of improvement and my life has slowly returned to normal. Prior to the surgery I thought my life was over, so there is hope with for people with pne if they get treated correctly.
Gratitude
posted by Judy Jackson on 21 Jan 2008 at 5:36 pm
I want to thank the people responsible for this website; you are helping others who really need some understanding of what is happening to them. I have been contacted by a couple of people who are in the throes of this awful condition and feel so grateful to be able to (hopefully) encourage them. I know what it's like to be hurting and confused by the strange symptoms and that just talking to someone who understands is a tremendous help. It is good to be on the other side of PNE. Prior to surgery I wondered if that was even possible. I don't like being cut on, but with this condition that was the best approach to release the entrapped nerve. At least that was my experience. Thank you very much for your website.
PNE
posted by Anon on 26 Jan 2008 at 7:52 pm
How long before you could expect to return to work as a truck driver following PNE surgery?
Pudendal Nerve Entrapment
posted by Joan gray on 06 Feb 2008 at 8:28 pm
As you live in Australia Sharon, I am wondering if you have any contacts who know anything about the control of this constant pain. i have had it for 5 years and nobody seems able to help me. i would welcome you contacting me
jaygee66@bigpond.net.au
Doctor's Address
posted by Marcia Hudson on 14 Feb 2008 at 11:40 am
My daughter has been suffering for about 5 years. She has met with the Dr in Paris but I do not know if she knows about the Houston doctor. Can I get his phone # or address and name? Thank you can good luck.
Houston PNE Specialist
posted by Natalie on 19 Feb 2008 at 2:30 pm
Marcia, the specialist you are looking for in Houston, Texas is Dr. Kenneth Renney. His phone # is 281-340-6422. You can reach him through his website at http://www.hosma.com/Renney/index.htm ... most interaction including scheduling of first test visits is done through a secured messaging system. I wish you and your daughter the best of luck!
Questions On PNE
posted by Anonymous on 09 Mar 2008 at 9:34 pm
1. Are there any doctor's familiar with P.N.E in Australia?
2. What are the prices for surgery etc? in France & Huston?
Operation From 6 Months
posted by elie on 15 Apr 2008 at 12:13 pm
I had decompression surgery in France from 6 months ago ( Prof Roger Robert chu nantes hotel dieu) I am fine , I feel 90 % amelioration!
Help For PNE Sufferers
posted by danielle w on 02 Jun 2008 at 4:47 am
Hello Sharon my name is danielle i am currently on botox with a Professor in sydney and am really happy with the results so far. it is early days for me, i am in contact with 3 other ladies two in australia and one in newzealand, who have had the operation ,for PNE, and they are all very happy with the s,done by the director of endogynocology who is doing the worlds first trials for botox for treatmentof PNE and after care of the surgery.
I was like yo in so much pain for years and years and i had screamingly severe pain to my bladder my bowel was starting to stop my bladder wanted to do the same thing, dont give up on it and to the lady i america i can put yo in touch with the lady in newzealand who has had the operation and yes she is right the gps just dont know.. and i guess nor should they it is a rare condition so it is just getting out there,there was a conference in sydney australia in February with, gynocolists there the leading speaaker was Dr.bertrand from france who taught the Professor in Sydney how to do this operationin 2007...
so it is very new to Australia not so new to the states and france. dont give up will you there is help out there now with botox. i talked to a lady in adelaide last week and she is now going to see te professor as he is the only one in australia who is doing the operations and botox to the pelvic floor. dont give up,i nearly did and im so glad i didnt
PNE
posted by Adeline on 13 Jun 2008 at 5:17 pm
For a year now I have really been suffering with a condition for which no doctor that I have seen has a clue. I have a very diligent sister who refused to give up on me and searched and searched until she found out about the condition called PNE. I have all of the symptoms of PNE. However, I was given the name of the doctor who wrote the book Headache in the Pelvis. I spoke with him and he said it is very dangerous to self diagnose, and that I should read the book.
For those of you who have read this book, does it help. This condition is NOT IN my head. It gets worse every day. I just don't know how to cope with it. I can neither sit or lay down. Both have the same effects on me. Luckily thanks to a sleeping pill, I do get thru the night. But once up, its a challenge every second of the day.
I go out a lot in order to remain vertical. But Im 76 and do get tired. I cant stand for the rest of my life.
Im seeing a neurologist in about a week, and will bring information my sister found on the net with me.
Has anyone found anything that will help with all of the effects of this disorder. I dont know if I have PNE or Pelvic Floor problem.
What sort of tests am I going to have to face? Any help will be appreciated. Thanks
Rare Pelvic Pain/Need Surgery For Nerve Entrapment
posted by John Carter on 16 July 2008 at 5:10 pm
I’m John Carter and I have been dealing with horrible nerve pain to my penis and scrotum for 3 years. I think I have a rare pudendal nerve that possible includes the dorsal L4 nerve root. I could give an in depth explanation ,that would be ten pages long, of what has worked and what hasn’t but I will keep this as shorts as possible. The original cause of the pain was from the right L5 transverse process that was 3 times normal size and had grown downwards till the impact with the sacrum started to cause horrible back pain. Then the failed fusion somehow caught a nerve that started to cause pain in my right scrotum. The testicular nerve pain was directly linked with the pain from the bones grinding-fusing together.
The more I walked on my right leg and put weight or strain on the right side l4-l5 region the greater the testicular torture increased. Then the pain spread from that one spot to cause excruciating pain in the right side of the head of my penis. I had several sacroiliac joint injections and theses injections blocked the pain for several hours each time. I had the L5 process amputated and that solved the associated back pain from the impacting bones. It also reduced the nerve pain by 50% but the nerve can still become impinged.
I then had a spinal stimulator implanted and use it all the time to cover up some of the pain spikes. One procedure that temporarily blocks the pain signals completely is when I have had sacroiliac joint injections. The short acting medicine is some how able to block the pain completely for a number of hours. After the injections the doctors have tried different neurotomies of the medial branches but except for the first one these have never been able to stop the pain long term. I had one Neurotomy that WORKED 100% but for some reason it wore off after a few months. This was done on the L4,L5, and S1 dorsal branches.
Later doctors tried doing the L5 and sacral branch nerves but these never worked. Recently I begged to get some diagnostic injections done to determine what branches the pain was coming through. One set done on L3,L4,L5 nerves completely blocked the pain for many hours. Another set done on the L2,L3,L4 also blocked the pain for many hours. The L4 dorsal nerve root was blocked BY ITSELF and the pain was blocked for many hours. I then had a neurotomy done on the L4 alone. Once again the temporary meds put in during the procedure completely blocked the pain for that afternoon. The neurotomy didn’t work even though the marcaine put in during the procedure did temporarily block the pain.
Only after 3 years of doctors frying all the wrong nerves above and below the L4 branch have I found that the damaged or impinged L4 dorsal root seems to be the source of my torture. Only surgery to free up the nerve from being compressed or to block the pain signals when it does get compressed could save my life. I was a senior about to graduate from college but the pain started and I have been trapped at my mother’s house for 3 years going from one failed procedure to another. I have Medicaid and Blue Cross Blue Shield insurance.
To sum up, the L4 diagnostic blocks and sacroiliac joint blocks have always blocked the pain and lasted for a varying number of hours. With the L5 Process gone I think the left over scar tissue might be keeping the nerve compressed. I wish it were just possible to do a neurectomy of the nerve. Maybe some type of procedure could free up the L4 root from being aggravated. I’d also be interested in trying another doctor’s luck with a neurotomy. Only through 3 years of testicular torture have I found that the pain comes through the L4 nerve. Thanks for any help you can offer. John Carter 903-675-6761 Athens Texas
PNE
posted by Debbie Chilton on 17 July 2008 at 3:00 am
My partner having being mis diagnosed for 13 years has finally been diagnosed with PNE. He has had severe pain in testicles, penis and anus. We were lucky enough to find a Consultant in the UK who knew the disgnosis straight away.
When he was at his wits end with the pain 10 years ago he found a Dr in the states that uses methadone for pain relief. Eventually he was put on methadone slowly increasing until he was on 100mg three times daily. it was a Dr Hochmann in USA who promotes this treatment. The pain has been under control for the past 8 years slowly decreasing the methadone to a level where he could maintain a good life. Yes, we have had a major flare up now which led us to try for the last time to get a diagnosis, which thankfully we had. Upping the methadone and awaitnfg result of MRI.
PNE
posted by Ruth Zeit on 23 July 2008 at 7:15 pm
Please help! In 2004 I fell, breaking my ankle and injuring my derriere (which I did not know at the time). I began to suffer from left groin pain, which became intolerable this December 2007. I consulted with 4 neurosurgeons in 2 states, who recommended spine surgery. Two offered to do a laminectomy, while the other 2 suggested implanting a rod up the spine, with hardware. I continued to search, since I did not have a definitive diagnosis. I traveled to yet another state, where a doctor specializing in peripheral nerves performed a nerve block. This produced numbness in the left groin for one blessed hour. He gave the diagnosis of PNE, offering to perform surgery. I began reading the internet, particularly about the protocol offered in Nantes, France and Houston, Texas. These are great distances from my home in Philadelphia.
Today I consulted with the head of the pain clinic at a large, prestigious teaching hospital. He encouraged me to lower my expectations, that this pain was going to be with me for life, that the internet often glorifies percentages of patients who have been cured, either by blocks or surgery. I am divorced, and really have no one to travel the distance to Houston or New Hampshire. This last doctor encouraged me to travel to Houston, for all the treatments at one center, but was not optimistic.
What does one do, who lives alone, and has to travel these very great distances for treatment? I cannot fathom that there is really no top rated place by tipna) in adjacent or closer states (e.g. New York, Boston, my own Philadelphia). What does a single person do, who has no family? This is a horrible disease. It's embarrassing. I am a piano teacher, and must sit for very long periods of time. I am in agony after a few hours. So I can't sit to work, to go to the movies, theater, out to dinner, etc. I have no life now. Please advise. Is it best to have 3 blocks and then surgery? Is it worth going through this? What are the true success rates of less pain after a block, or after surgery?
Please advise on traveling alone, and getting post-op help. I am desperate, and would appreciate someone responding to these queries. Life is losing it's joy. I am not even looking forward to seeing my grandsons and my daughters, since I know I will be in substantial pain. My daughters cannot travel with me; one is busy working with 2 young children and the other is sick, herself. Please find it in your heart to try to advise me. Ruth You may write me personally, if you'd prefer at "Ruth Zeit"
piano385(at) comcast.net
1640 Oakwood Drive-Apartment W122
Narberth, Pennsylvania 19072
Need PNE Surgery Information
posted by Jenny Bledsoe on 01 Sept 2008 at 3:39 pm
I was diagnosed with PNE by one dr. in the Bay Area. Another dr. is not so sure. I have had 4 nerve blocks with minimal result and had botox 10 ten days ago. So far no releif. I have also had phystical therapy for 6 months and am doing accupuncture. I am on neurontin as well. This is my third flare up and like the others who posted, it is ruining my life.
I am looking for any input from anyone who has had PNE surgery- who was your surgeon; what is your outcome?
Thanks.
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