Has anyone had the Laparoscopic method of decompression surgery. If so please share your experience. Is it only applicable for certain locations of PN entrapment and not others? I would really like to know a whole lot more then I do about this method and how effective it is. I had it for other things like fibroid removal and it made a lot of difference in the recovery time, pain level etc. as opposed to when they cut me open. If you had any experience with this type of PNE surgery please, please, please share it. You are welcome to contact me directly. Thank you.
curious1
laparoscopic PNE surgery
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HerMajesty
- Posts: 1134
- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: laparoscopic PNE surgery
Dr. Tibet Erdogru in Turkey is the only doctor i know of who does this currently (?), and you can search his name in the search box in the upper right to see some discussion and outcomes. Here is a long thread about it, and the more you read of it the less promising it seems as a treatment option: http://www.pudendalhope.info/forum/view ... it=Erdogru The overall picture seems kind of grim. Not to mention I wonder if Dr. Erdogru is currently open for business in light of the current civil unrest in Turkey.
Surgeries like fibroid removal were perfected using open procedures, and then were further enhanced through development of laparoscopic techniques. Pudendal decompression surgery is still far from being perfected or routine: Outcomes are very variable. So IMO it seems a little soon to jump that additional hurdle and try to perform the procedure laparoscopically.
Surgeries like fibroid removal were perfected using open procedures, and then were further enhanced through development of laparoscopic techniques. Pudendal decompression surgery is still far from being perfected or routine: Outcomes are very variable. So IMO it seems a little soon to jump that additional hurdle and try to perform the procedure laparoscopically.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
Re: laparoscopic PNE surgery
Dr Marc Possover also does laparoscopic decompression surgery he is based in Switzerland.
I had surgery with Dr Tibet in Turkey a year ago, l,m from the UK.
I did not have a great time over there and I know Ali Pashi who went after me had a terrible time.
One year on and I am better than before , I,m not sure how much is due to surgery and how much is due to some lateral hip streches I,ve been doing with a new therapist.
On good days I can get up to 50% improvement,BUT I am still unable to sit down.
Let me know if you want any more info. I will try to be helpful.
Regards Molly
I had surgery with Dr Tibet in Turkey a year ago, l,m from the UK.
I did not have a great time over there and I know Ali Pashi who went after me had a terrible time.
One year on and I am better than before , I,m not sure how much is due to surgery and how much is due to some lateral hip streches I,ve been doing with a new therapist.
On good days I can get up to 50% improvement,BUT I am still unable to sit down.
Let me know if you want any more info. I will try to be helpful.
Regards Molly
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: laparoscopic PNE surgery
On paper the benefits of a laparoscopic approach should be just short of overwhelming, but it doesn't seem to be panning out like that unfortunately.
I'm really not sure if some people wouldn't benefit hugely from any type of decompression surgery, as length of entrapment and a patients age are sited as additional factors that will have a effect on any surgical outcome.
The longer the nerve is entrapped the less likely a good result and of course the healing process slows with advancing years. So there hasn't been a 'level playing field' for results, as surgeons are still often playing catch up due to late diagnosis, a lack of PN awareness and PN medics, especially surgeons.
People who have the most dramatic recoveries do tend to have had the condition for the shorter time, or so it seems to me anyway.
I think that given the option I wouldn't choose a laparoscopic approach. In fact I have been offered decompression surgery (OH YES I HAVE!!! but only the sciatic nerve
) by a local orthopedic surgeon, who would normally offer a laparoscopic option, but (if I do say yes) he would opt to do the decompression as an open surgery in this case.
Take care,
Helen
I'm really not sure if some people wouldn't benefit hugely from any type of decompression surgery, as length of entrapment and a patients age are sited as additional factors that will have a effect on any surgical outcome.
The longer the nerve is entrapped the less likely a good result and of course the healing process slows with advancing years. So there hasn't been a 'level playing field' for results, as surgeons are still often playing catch up due to late diagnosis, a lack of PN awareness and PN medics, especially surgeons.
People who have the most dramatic recoveries do tend to have had the condition for the shorter time, or so it seems to me anyway.
I think that given the option I wouldn't choose a laparoscopic approach. In fact I have been offered decompression surgery (OH YES I HAVE!!! but only the sciatic nerve
) by a local orthopedic surgeon, who would normally offer a laparoscopic option, but (if I do say yes) he would opt to do the decompression as an open surgery in this case.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: laparoscopic PNE surgery
Dr. Nieves in Tennessee was doing the laparoscopic approach and I heard that Dr. Howard learned the procedure from him. Unfortunately, the posts regarding Dr. Nieves and results of various surgeries from him were lost from public view when the old pudendal.info forum discontinued.
My obgyn told me that laparoscopic surgery is more difficult to perform than open surgery and has a much steeper learning curve so it takes a talented surgeon to be able to perform it successfully. Obviously, there is not as good of visualization as there is in an open surgery so while it sounds great that it is less invasive and easier to recover from, in the case of pudendal nerve decompression there may not be as good of access to the nerve resulting in incomplete neurolysis of the nerve. I guess if you are considering surgery from someone who uses this approach, I would ask them how many they have performed and what the statistics are on the results in overall improvement post-op (not just improvement in one or 2 symptoms.)
Possover is the only surgeon I know of to have published on results with the laparoscopic approach and it is not as widely accepted or used as the TG approach.
Violet
My obgyn told me that laparoscopic surgery is more difficult to perform than open surgery and has a much steeper learning curve so it takes a talented surgeon to be able to perform it successfully. Obviously, there is not as good of visualization as there is in an open surgery so while it sounds great that it is less invasive and easier to recover from, in the case of pudendal nerve decompression there may not be as good of access to the nerve resulting in incomplete neurolysis of the nerve. I guess if you are considering surgery from someone who uses this approach, I would ask them how many they have performed and what the statistics are on the results in overall improvement post-op (not just improvement in one or 2 symptoms.)
Possover is the only surgeon I know of to have published on results with the laparoscopic approach and it is not as widely accepted or used as the TG approach.
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: laparoscopic PNE surgery
Hi Helen,helenlegs 11 wrote: In fact I have been offered decompression surgery (OH YES I HAVE!!! but only the sciatic nerve
Take care,
Helen
I just noticed on your medical update that you've been diagnosed '4 times' now with pelvic nerve entrapment.
I'm just wondering what is the surgeon's explanation for decompressing just the sciatic nerve? Would that be a starting point before they do decompression of the other nerves? or is just the sciatic nerve?
Where is your sciatic nerve compressed? I presume it's up high? or is it compressed by the piriformis muscle? or by some other anatomical structure?
Cheers, Jackson
PS. Just noticed the first question is about laproscopic decompression so perhaps we can skew this thread back towards the topic. Just very interested in Helen's case. Cheers Jackson.
Re: laparoscopic PNE surgery
Dr. Beco in Belgium does laproscopic surgery from the transrectal approach area. I do not believe his results are any better or worse than the trans-glute approach. Please correct me if I am wrong. If anyone has had surgery with De. Beco and would like to report on results, please do do.
kone
kone
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: laparoscopic PNE surgery
Hi jackson,
Yes it is higher up and in the piriformis muscle as you suspected. I can tell the exact spot, as I had a haematoma in that muscle, after a fall. This is where the main pain still is, if I press there, it's deep, and so is the pain
a good firm press can send the sciatic and pudendal nerves zinging.
I have 4 diagnoses because I have had such dreadful time getting this problem accepted medically for referrals, benefits and a claim. I was first diagnosed by Dr Filler but as he is American no one here (UK) seemed convinced, so I found Dr Greenslade here, he agreed with Dr Filler. I still had no joy however, still don't understand why! 2 concurring expert diagnoses??)
The next one was Dr Jenner, through the claim process, although I did choose him. He also agreed with the other two but unfortunately a local neuro surgeon had already had a go at my diagnosis for the claim (Jenner was such a fight to get as a second opinion) This neuro is very well respected locally but he didn't have a clue about pelvic pain and didn't even think that a piriformis nerve problem could exist, so his 30 page reasoning why it was probably my former (and long resolved) spinal complaint that was to blame for my current pain, didn't help me one bit.
The claim 'collapsed' when a pain consultant, chosen by the 'opposition', also didn't have a clue about pelvic or piriformis anything, and said I had central sensitisation(CS) due to my former back problem. I couldn't win!
As my GP hasn't been at all helpful throughout, I haven't made any good progress through the normal medical channels for treatment either.
However, she did eventually refer me for pain management at my request last October. After some physio and unhelpful acupuncture, I had a sciatic nerve conduction test (positive) through this new pain consultant (I love her
) and a spinal MRI scan (negative) so over 5 years after my initial fall and onset of pelvic nerve pain I have a 4th diagnosis of pelvic neuralgia, this time with some documented test proof! I can't manage even a drum roll anymore tho'.
Anyone who had any pelvic nerve knowledge would be able to see and understand the actual problem because of my symptoms however. Some of them are easily testable too. I would easily 'pass' a heat or pin prick test, which is obviously a nerve problem, and pressing along the nerve causes pain of course.
They must have though I was making it all up??
Unfortunately the additional proof of the nerve conduction test has come a bit late for my claim as well as unnecessarily late for treatment. This could have been done long ago.
In the UK there is no one who will tackle 4 nerves being decompressed at once and as I can not get a referral anywhere other than locally, this sciatic nerve decompression seems to be my only and final option unless I pay thousands that I don't have, but would have had if my claim had been settled justly!!.
Just call me lucky
One good thing though, I may be able to get an Industrial injuries benefit now. . . .I am waiting (as per) for a letter from them to see what they say re the nerve conduction test results and how they can wriggle out of that one. I may be hopping on one leg for joy when that news comes.
The letter from the upper tribunal judge on that one is stuck in an administrative typing queue and has been for a month, probably more. . . . I won't even begin to tell you that ridiculous tale. Suffice to say that they DEFINITELY did not believe or my pelvic nerve diagnostic doctors. At one time in a (lower) tribunal they said that these Doctors could be quacks (er google them?) and if it was found that The information I have provided re their diagnoses had been procured from the internet. .. . WHAT??. . . .then they could be 'facing a long jail sentence', meaning me as the alleged procurer of course. Thankfully I am not typing this while incarcerated but I got absolutely nowt (nothing) out of them except upsetting nonsense.
This has been an alternative comedy interlude on behalf of the unjustly aggrieved party . . . . NOW back to laparoscopies
Yes it is higher up and in the piriformis muscle as you suspected. I can tell the exact spot, as I had a haematoma in that muscle, after a fall. This is where the main pain still is, if I press there, it's deep, and so is the pain
a good firm press can send the sciatic and pudendal nerves zinging.I have 4 diagnoses because I have had such dreadful time getting this problem accepted medically for referrals, benefits and a claim. I was first diagnosed by Dr Filler but as he is American no one here (UK) seemed convinced, so I found Dr Greenslade here, he agreed with Dr Filler. I still had no joy however, still don't understand why! 2 concurring expert diagnoses??)
The next one was Dr Jenner, through the claim process, although I did choose him. He also agreed with the other two but unfortunately a local neuro surgeon had already had a go at my diagnosis for the claim (Jenner was such a fight to get as a second opinion) This neuro is very well respected locally but he didn't have a clue about pelvic pain and didn't even think that a piriformis nerve problem could exist, so his 30 page reasoning why it was probably my former (and long resolved) spinal complaint that was to blame for my current pain, didn't help me one bit.
The claim 'collapsed' when a pain consultant, chosen by the 'opposition', also didn't have a clue about pelvic or piriformis anything, and said I had central sensitisation(CS) due to my former back problem. I couldn't win!
As my GP hasn't been at all helpful throughout, I haven't made any good progress through the normal medical channels for treatment either.
However, she did eventually refer me for pain management at my request last October. After some physio and unhelpful acupuncture, I had a sciatic nerve conduction test (positive) through this new pain consultant (I love her
) and a spinal MRI scan (negative) so over 5 years after my initial fall and onset of pelvic nerve pain I have a 4th diagnosis of pelvic neuralgia, this time with some documented test proof! I can't manage even a drum roll anymore tho'.Anyone who had any pelvic nerve knowledge would be able to see and understand the actual problem because of my symptoms however. Some of them are easily testable too. I would easily 'pass' a heat or pin prick test, which is obviously a nerve problem, and pressing along the nerve causes pain of course.
They must have though I was making it all up??
Unfortunately the additional proof of the nerve conduction test has come a bit late for my claim as well as unnecessarily late for treatment. This could have been done long ago.
In the UK there is no one who will tackle 4 nerves being decompressed at once and as I can not get a referral anywhere other than locally, this sciatic nerve decompression seems to be my only and final option unless I pay thousands that I don't have, but would have had if my claim had been settled justly!!.
Just call me lucky
One good thing though, I may be able to get an Industrial injuries benefit now. . . .I am waiting (as per) for a letter from them to see what they say re the nerve conduction test results and how they can wriggle out of that one. I may be hopping on one leg for joy when that news comes.
The letter from the upper tribunal judge on that one is stuck in an administrative typing queue and has been for a month, probably more. . . . I won't even begin to tell you that ridiculous tale. Suffice to say that they DEFINITELY did not believe or my pelvic nerve diagnostic doctors. At one time in a (lower) tribunal they said that these Doctors could be quacks (er google them?) and if it was found that The information I have provided re their diagnoses had been procured from the internet. .. . WHAT??. . . .then they could be 'facing a long jail sentence', meaning me as the alleged procurer of course. Thankfully I am not typing this while incarcerated but I got absolutely nowt (nothing) out of them except upsetting nonsense.
This has been an alternative comedy interlude on behalf of the unjustly aggrieved party . . . . NOW back to laparoscopies
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: laparoscopic PNE surgery
Hi Helen,
Wow, that's some battle you are going through with tribunals etc.
Sounds like you could do with a large pair of scissors to cut through all that red tape (no joke intended).
That was a very detailed reply. It certainly explains the 4 diagnoses you've had for pelvic neuralgia. And piriformis muscles seems to be an issue for a number of people on this forum. Also,I think it's a pity you can't get more support from your GP.
I guess all I can say is good luck with the industrial benefits claim and with your efforts to get the surgical intervention that you seek.
Cheers Jackson.
Wow, that's some battle you are going through with tribunals etc.
Sounds like you could do with a large pair of scissors to cut through all that red tape (no joke intended).
That was a very detailed reply. It certainly explains the 4 diagnoses you've had for pelvic neuralgia. And piriformis muscles seems to be an issue for a number of people on this forum. Also,I think it's a pity you can't get more support from your GP.
I guess all I can say is good luck with the industrial benefits claim and with your efforts to get the surgical intervention that you seek.
Cheers Jackson.
Re: laparoscopic PNE surgery
Dr. Howard uses this method. He has dedicated his life to finding solutions to pelvic pain. His crudentials seem quite good. I don't know how the statistics turned out for the surgeries but he seems a very dedicated doctor for whom it's a calling not a profession. I agree from experience that it takes higher skill to perform any type of laparoscopic surgery.