I had pudendal nerve surgery with Dr. Dellon on May 18th and I'm waiting to hear about how much my insurance is going to pay. So far they have payed the whole anesthesia charge! They will most likely pay most of the outpatient site facility charges as well. I doubt that they will pay the full amount that Dr. Dellon charges for his surgical fee which was $30,000. This was for bilateral pudendal nerve surgery. My inferior cluneal nerves just happened to be piercing my sacrotuberous ligaments, and since they looked very inflammed, he dissected them. Luckily he did not charge me anything extra for this!
I do plan to write about my experiences regarding my surgery in case updates. I was going to wait a bit longer since it has only been 8 weeks, but I think I will start writing over the weekend. Overall I am doing much better. My excruciating ano-rectal pain has gone and that is a real blessing. I am still very tender over the ischial tuberosities, particularly the areas where the incisions are, so I can't sit yet. But it has only been 8 weeks. I am bending and squatting too much and I'm sure that is not good. I have also been weaning off my Fentanyl patches and as a result am having a bit more pain.
Lois
Finding the right Dr. for possible surgery
-
Gusselsprouts
- Posts: 20
- Joined: Sun Nov 28, 2010 12:50 am
Re: Finding the right Dr. for possible surgery
PaulSa,
If you are interested in the Houston Team, you can go to the home page of this website, click on list of doctors, then North American physicians, then Dr Ken Renney. You will find instructions for contacting him, and once you are signed up for telehealth, you can communicate with him by secure email. He will schedule you for a free 15 minute consultation in which you can have all your questions answered over the phone. After I had done this, it took 2 months to be scheduled for my first diagnostic visit which included a CT guided pudendal nerve block at the ischial spine(s).
Then I had to return for a second CT guided block, this time done at alcock's canal as well as the ischial spines. If you have already had CT guided nerve blocks done and they were positive, you may need only one visit before your surgery visit, but otherwise you will need two visits if you wish to have surgery with Dr Ansell, the Houston neurosurgeon. In my case it took about 6 months from when I started to make contact until I could have been scheduled for surgery.
As far as I know, the Houston group is still the only PNE specialist team in the USA who have actually published a research study of their own patients with their own results. The results were similar to the French studies, with about 2/3 of patients seeing improvement of 50% or more. I could not find the publication listed on this site, I think it was in the International Journal of Urology, you may find out more on tipna.org.
Whatever you decide, best of luck to you!
Jeanie
If you are interested in the Houston Team, you can go to the home page of this website, click on list of doctors, then North American physicians, then Dr Ken Renney. You will find instructions for contacting him, and once you are signed up for telehealth, you can communicate with him by secure email. He will schedule you for a free 15 minute consultation in which you can have all your questions answered over the phone. After I had done this, it took 2 months to be scheduled for my first diagnostic visit which included a CT guided pudendal nerve block at the ischial spine(s).
Then I had to return for a second CT guided block, this time done at alcock's canal as well as the ischial spines. If you have already had CT guided nerve blocks done and they were positive, you may need only one visit before your surgery visit, but otherwise you will need two visits if you wish to have surgery with Dr Ansell, the Houston neurosurgeon. In my case it took about 6 months from when I started to make contact until I could have been scheduled for surgery.
As far as I know, the Houston group is still the only PNE specialist team in the USA who have actually published a research study of their own patients with their own results. The results were similar to the French studies, with about 2/3 of patients seeing improvement of 50% or more. I could not find the publication listed on this site, I think it was in the International Journal of Urology, you may find out more on tipna.org.
Whatever you decide, best of luck to you!
Jeanie
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: Finding the right Dr. for possible surgery
Lois,
Just a few questions. How long did your surgery take ? Does Dr. Dellon base his fee on what he finds once he goes inside ? Was it $12,00 per pudendal nerve and $6.000 for something else ? How did he determine you were bilaterally entrapped ? Were you diagnosed with any other doctor prior to seeing Dr. Dellon ? Thanks for sharing your experience and info on Dr. Dellon when you are up to it. Glad you are feeling better. Here's hoping each day will be better than the one before.
Best Wishes,
Don
Just a few questions. How long did your surgery take ? Does Dr. Dellon base his fee on what he finds once he goes inside ? Was it $12,00 per pudendal nerve and $6.000 for something else ? How did he determine you were bilaterally entrapped ? Were you diagnosed with any other doctor prior to seeing Dr. Dellon ? Thanks for sharing your experience and info on Dr. Dellon when you are up to it. Glad you are feeling better. Here's hoping each day will be better than the one before.
Best Wishes,
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: Finding the right Dr. for possible surgery
First off, thanks for all the great info in this thread, keep it coming!
Well, I made an appointment for a consult with Dr. Hibner for Feb 2012, if I require surgery that could be another 6-12month wait and for that reason I am looking elsewhere for now.
I sent an email to Dr. Beco and received a response within a few hours which I was very impressed with considering it was 9-10pm local time. Here are his responses to the questions I asked. Found it interesting that he does look at an MRI as a valid tool for diagnosing Pudendal….. Interesting first link he provided. Has anyone had surgery with Dr. Beco? Any feedback?
Hello Dr. Beco
I am a Canadian resident who has been diagnosed with Pudendal Neuralgia.
I am looking for your help in reviewing my recent MRI I had with Dr. Potter in New York, to determine if I am a candidate for surgery with you.
MRI is not a validate tool to make the diagnosis of pudendal neuralgia. A good clinical examination is necessary. Look at this paper:
http://www.biomedcentral.com/1471-2482/4/15/ I have also attached for your review, a timeline of my symptoms over the last 4 years including the progression of my condition.
OK. No special comment.
In your expertise, what surgical method or approach would you suggest and can you do both sides (bilateral) in one visit?
If necessary I can perform a bilateral pudendal nerve decompression by the perineal route. It is minimally invasive and enables a complete decompression of the nerve from the sacral roots to the skin with only the sacro-spinal ligament cut. Look at this video: http://www.youtube.com/watch?v=cXrRFo7ffYE
Please let me know what the current wait times are for an appointment and if surgery is an option, what the current booking times are. Being Canadian it is obviously a far trip which I will have severe difficulty taking, as my condition prevents me from sitting longer than 15 minutes.
It should be possible to manage your problem in September or October this year. Earlier would be very difficult.
I would appreciate any feedback or suggestions you may have for me that would assist me in resolving my problem.
Thanking you in advance for your time,
Regards,
Jacques Beco m.d.
Well, I made an appointment for a consult with Dr. Hibner for Feb 2012, if I require surgery that could be another 6-12month wait and for that reason I am looking elsewhere for now.
I sent an email to Dr. Beco and received a response within a few hours which I was very impressed with considering it was 9-10pm local time. Here are his responses to the questions I asked. Found it interesting that he does look at an MRI as a valid tool for diagnosing Pudendal….. Interesting first link he provided. Has anyone had surgery with Dr. Beco? Any feedback?
Hello Dr. Beco
I am a Canadian resident who has been diagnosed with Pudendal Neuralgia.
I am looking for your help in reviewing my recent MRI I had with Dr. Potter in New York, to determine if I am a candidate for surgery with you.
MRI is not a validate tool to make the diagnosis of pudendal neuralgia. A good clinical examination is necessary. Look at this paper:
http://www.biomedcentral.com/1471-2482/4/15/ I have also attached for your review, a timeline of my symptoms over the last 4 years including the progression of my condition.
OK. No special comment.
In your expertise, what surgical method or approach would you suggest and can you do both sides (bilateral) in one visit?
If necessary I can perform a bilateral pudendal nerve decompression by the perineal route. It is minimally invasive and enables a complete decompression of the nerve from the sacral roots to the skin with only the sacro-spinal ligament cut. Look at this video: http://www.youtube.com/watch?v=cXrRFo7ffYE
Please let me know what the current wait times are for an appointment and if surgery is an option, what the current booking times are. Being Canadian it is obviously a far trip which I will have severe difficulty taking, as my condition prevents me from sitting longer than 15 minutes.
It should be possible to manage your problem in September or October this year. Earlier would be very difficult.
I would appreciate any feedback or suggestions you may have for me that would assist me in resolving my problem.
Thanking you in advance for your time,
Regards,
Jacques Beco m.d.
Last edited by PaulSa on Sun Jul 17, 2011 1:53 am, edited 1 time in total.
Re: Finding the right Dr. for possible surgery
PaulSa, many of the dr.'s are still trying to figure out the validity of Dr. Potter's MRI. I know in my case when Dr. Hibner did my right side it matched what she reported on the MRI. However, Dr. Hibner is still not convinced of her MRI results yet even though there have been other cases confirmed besides mine.
Dr. Beco gave a nice talk with very impressive results. Doesn't sound like he cuts the ST ligament. Is that corrrect? How does he deal with someone who's pudendal nerve is adhered to the ST ligament?
I have been reading publications on the anatomy of the pudendal nerve. Since Dr. Beco uses the rectal branch to work his way to find the main pudendal nerve I wonder what he does with patients in which the rectal branch comes right off of S4 and is separate from the main branch of the pudendal nerve (20% of patients) (See for example Mahakkanukrauh et all 2005). I would hope that at some point he would realize that he as decompressed the full rectal branch and never touched the main pudendal nerve. I have also wondered how any of the pudendal dr.'s deal with this issue of patients with a separate rectal branch. When I see Dr. Hibner I will have to ask him what he does. I know I was in the majority of patients (80%) that the rectal branch came off of the pudendal nerve.
Hopefully, someone on the forum who has had surgery with Dr. Beco can respond.
Dr. Beco gave a nice talk with very impressive results. Doesn't sound like he cuts the ST ligament. Is that corrrect? How does he deal with someone who's pudendal nerve is adhered to the ST ligament?
I have been reading publications on the anatomy of the pudendal nerve. Since Dr. Beco uses the rectal branch to work his way to find the main pudendal nerve I wonder what he does with patients in which the rectal branch comes right off of S4 and is separate from the main branch of the pudendal nerve (20% of patients) (See for example Mahakkanukrauh et all 2005). I would hope that at some point he would realize that he as decompressed the full rectal branch and never touched the main pudendal nerve. I have also wondered how any of the pudendal dr.'s deal with this issue of patients with a separate rectal branch. When I see Dr. Hibner I will have to ask him what he does. I know I was in the majority of patients (80%) that the rectal branch came off of the pudendal nerve.
Hopefully, someone on the forum who has had surgery with Dr. Beco can respond.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
-
Gusselsprouts
- Posts: 20
- Joined: Sun Nov 28, 2010 12:50 am
Re: Finding the right Dr. for possible surgery
Don,
I apologize for the slow response to your questions. Although I'm happy to be reducing my dose on the fentanyl patches that I have been using, I have found the tapering process to be a bit unpleasant! Feeling more myself now--at least until the next dose reduction...ugh.
How long did your surgery take?
My "bilateral neurolysis of the pudendal nerve through a transgluteal, posterior, approach" and "resection bilaterally of the inferior cluneal nerve" took approximately 3 hours.
Does Dr. Dellon base his fee on what he finds once he goes inside ? Was it $12,00 per pudendal nerve and $6.000 for something else ? How did he determine you were bilaterally entrapped ?
We came to an agreement prior to surgery on what the fee would be. He decided that he would be performing surgery on the pudendal nerves only that day and that the fee would be $15,000 per pudendal nerve. He did not charge for the cluneal nerves because: a.) he wasn't really expecting to find them there, and b.) he was already there and didn't need to make another external incision. So, I guess unless, he had to spend a lot of extra time, he would not charge extra, but I wouldn't hang my hat on that. I think that is something you would need to discuss with him prior to surgery.
How did he determine you were bilaterally entrapped ?
I would say that he determined that by listening to my history and by doing a physical exam. He didn't seem to take much stock in Dr. Potter's MRI results.
Were you diagnosed with any other doctor prior to seeing Dr. Dellon ?
My pain physician who did two pudendal nerve blocks felt that I was definitely entrapped. Dr. Potter also felt that I was entrapped.
Thanks for your kind wishes, Don. I am doing better. I've started water walking and I must say I understand why he recommends it. I am very spoiled as we live right on a small lake and I can walk right out the door into the water. With temps nearing 100 over the next few days that's perfect for me. I can't walk otherwise as the heat makes me weak due to my MS.
Hope this info. helps and let me know if you have any other questions.
Best wishes for a pain free day!
Lois
I apologize for the slow response to your questions. Although I'm happy to be reducing my dose on the fentanyl patches that I have been using, I have found the tapering process to be a bit unpleasant! Feeling more myself now--at least until the next dose reduction...ugh.
How long did your surgery take?
My "bilateral neurolysis of the pudendal nerve through a transgluteal, posterior, approach" and "resection bilaterally of the inferior cluneal nerve" took approximately 3 hours.
Does Dr. Dellon base his fee on what he finds once he goes inside ? Was it $12,00 per pudendal nerve and $6.000 for something else ? How did he determine you were bilaterally entrapped ?
We came to an agreement prior to surgery on what the fee would be. He decided that he would be performing surgery on the pudendal nerves only that day and that the fee would be $15,000 per pudendal nerve. He did not charge for the cluneal nerves because: a.) he wasn't really expecting to find them there, and b.) he was already there and didn't need to make another external incision. So, I guess unless, he had to spend a lot of extra time, he would not charge extra, but I wouldn't hang my hat on that. I think that is something you would need to discuss with him prior to surgery.
How did he determine you were bilaterally entrapped ?
I would say that he determined that by listening to my history and by doing a physical exam. He didn't seem to take much stock in Dr. Potter's MRI results.
Were you diagnosed with any other doctor prior to seeing Dr. Dellon ?
My pain physician who did two pudendal nerve blocks felt that I was definitely entrapped. Dr. Potter also felt that I was entrapped.
Thanks for your kind wishes, Don. I am doing better. I've started water walking and I must say I understand why he recommends it. I am very spoiled as we live right on a small lake and I can walk right out the door into the water. With temps nearing 100 over the next few days that's perfect for me. I can't walk otherwise as the heat makes me weak due to my MS.
Hope this info. helps and let me know if you have any other questions.
Best wishes for a pain free day!
Lois
Re: Finding the right Dr. for possible surgery
Hi Lois,
Did Dr. Dellon cut your Sacrotuebrous ligament?If so ,did he suture it back like Hibner,Conway etc are doing it to avoid Pelvic instabilty such as SIJD,piriformis muscle syndrome etc.
I am really interested to know that .
Regards,
Ali
Did Dr. Dellon cut your Sacrotuebrous ligament?If so ,did he suture it back like Hibner,Conway etc are doing it to avoid Pelvic instabilty such as SIJD,piriformis muscle syndrome etc.
I am really interested to know that .
Regards,
Ali
Diagnosed for PNE by Dr. Jerome Weiss in June 2007.Started PT with Amy Stein in NYC.
PT for almost 3 years now without any results.
Pudendal Nerve blocks in August,2007 by Dr. Quesda left me with sitting pain.
Unilateral TIR approach with Dr. Bautrant on 18 Febuary,2010 with no major improvements and sitting is much worse.
MRI By Dr. Potter reveals nerve entrapment in the ST,AC and DN.
Dorsal Nerve Decompression surgery on April 8,2011
Redo surgery by Dr. Hibner on July 18,2011
PT for almost 3 years now without any results.
Pudendal Nerve blocks in August,2007 by Dr. Quesda left me with sitting pain.
Unilateral TIR approach with Dr. Bautrant on 18 Febuary,2010 with no major improvements and sitting is much worse.
MRI By Dr. Potter reveals nerve entrapment in the ST,AC and DN.
Dorsal Nerve Decompression surgery on April 8,2011
Redo surgery by Dr. Hibner on July 18,2011
Re: Finding the right Dr. for possible surgery
Lois,
Thanks for your reply. I guess your post-op pain is better since you are tapering off the fenatyl. If so, that is good news. Did you follow Cora's thread about using suboxone to taper off opiates ? She was quite enthusiastic about it. Did Dr. Dellon do an internal exam and press along the course of the pudendal nerve ? Did Dr. Potter find bilateral scarring on your MRI ? Did Dr. Dellon find bilateral scarring and/or impingement when he went inside ? I have heard that he does the incision closer to the middle than other surgeons ? As you can see, I have a zillion questions. Also, I have found Lyrica to be really helpful but I know it doesn't work for everybody. Don't taper until the pain backs off. All my best wishes for continued success in your recovery.
Ali,
Good to see your post. I have missed you. Did you have your surgery yesterday ? How are you doing ? I am pretty sure that I remember reading that Dr. Dellon severs the ST ligament without repair.
All My Best,
Don
Thanks for your reply. I guess your post-op pain is better since you are tapering off the fenatyl. If so, that is good news. Did you follow Cora's thread about using suboxone to taper off opiates ? She was quite enthusiastic about it. Did Dr. Dellon do an internal exam and press along the course of the pudendal nerve ? Did Dr. Potter find bilateral scarring on your MRI ? Did Dr. Dellon find bilateral scarring and/or impingement when he went inside ? I have heard that he does the incision closer to the middle than other surgeons ? As you can see, I have a zillion questions. Also, I have found Lyrica to be really helpful but I know it doesn't work for everybody. Don't taper until the pain backs off. All my best wishes for continued success in your recovery.
Ali,
Good to see your post. I have missed you. Did you have your surgery yesterday ? How are you doing ? I am pretty sure that I remember reading that Dr. Dellon severs the ST ligament without repair.
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: Finding the right Dr. for possible surgery
Hi Don,
Dr. Hibner postponed my surgery till the month of December because I am still sore from the dorsal nerve surgery from Professor Aszmann and the nerve is still irritated.I will be posting my 3 month dorsal nerve surgery report soon.
Kind Regards,
Ali
Dr. Hibner postponed my surgery till the month of December because I am still sore from the dorsal nerve surgery from Professor Aszmann and the nerve is still irritated.I will be posting my 3 month dorsal nerve surgery report soon.
Kind Regards,
Ali
Diagnosed for PNE by Dr. Jerome Weiss in June 2007.Started PT with Amy Stein in NYC.
PT for almost 3 years now without any results.
Pudendal Nerve blocks in August,2007 by Dr. Quesda left me with sitting pain.
Unilateral TIR approach with Dr. Bautrant on 18 Febuary,2010 with no major improvements and sitting is much worse.
MRI By Dr. Potter reveals nerve entrapment in the ST,AC and DN.
Dorsal Nerve Decompression surgery on April 8,2011
Redo surgery by Dr. Hibner on July 18,2011
PT for almost 3 years now without any results.
Pudendal Nerve blocks in August,2007 by Dr. Quesda left me with sitting pain.
Unilateral TIR approach with Dr. Bautrant on 18 Febuary,2010 with no major improvements and sitting is much worse.
MRI By Dr. Potter reveals nerve entrapment in the ST,AC and DN.
Dorsal Nerve Decompression surgery on April 8,2011
Redo surgery by Dr. Hibner on July 18,2011
Re: Finding the right Dr. for possible surgery
Anyone know how I can make contact Dr. Bautrant? At this point I have sent two emails with no response, I've also tried calling twice and it just goes straight into a recording with music and a voice over in French. I assumed it was hold and stayed on the phone for awhile but no one answered. Any suggestions?
On a side note, Dr. Beco gave me his personal number to contact him directly which I found to be amazing, not sure how it is in the US but trying to speak to a Dr. on the phone here in Canada is next to impossible.
On a side note, Dr. Beco gave me his personal number to contact him directly which I found to be amazing, not sure how it is in the US but trying to speak to a Dr. on the phone here in Canada is next to impossible.