Hi Jane,
You can your 3 Tesla MRI done with Dr. Potter at HSS and seewhat is causing the pain on your elft side.Your PN might have got re-entrapped in scar tissue or the pain could be originating from the one of the points of entrapment that wasn't addressed during the surgery.
Were both your ligaments severed or sectioned?
All the best,
Ali
Post Surgery update.
Re: Post Surgery update.
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: Post Surgery update.
Hi Ali,
I believe both my ligaments were cut and not severed. I have also read that the transgluteal method exposes the nerve to air which MAY at a later date produce fibrous tissue to entrap the nerve again - I really dont know what has happened
to me at this point in time. The right was done exactly the same and that is not too bad at all at the moment. I am in England and cannot travel to US but I read that there is a new MRI type scanner that can actually pick up nerves whereas the usual MRI cannot. I had two MRI's and then the doctor wrote to my GP saying that there was nothing wrong and I needed Psychiatric help!
Take care
Jane
I believe both my ligaments were cut and not severed. I have also read that the transgluteal method exposes the nerve to air which MAY at a later date produce fibrous tissue to entrap the nerve again - I really dont know what has happened
to me at this point in time. The right was done exactly the same and that is not too bad at all at the moment. I am in England and cannot travel to US but I read that there is a new MRI type scanner that can actually pick up nerves whereas the usual MRI cannot. I had two MRI's and then the doctor wrote to my GP saying that there was nothing wrong and I needed Psychiatric help!
Take care
Jane
Re: Post Surgery update.
Hi there,
I am new to the website and I just wanted to know of anyone who has had surgery with Professor Carlstedt in the UK. I have terrible burning pain the perineum and sitting is unbearable. I am on pregabalin, tramadol and butrans patch. Nothing really helps.I have had 2 pudendal blocks and only responded partially to the second. The pain is so intense now and I am considering surgery. I am really not too sure which surgeon to choose. I know Professor Carlstedt is a very experienced surgeon and is the only person in the UK performing pudendal decompression surgery. However, the Nantes team in France were the pioneers of this kind of surgery. I have also read a lot about Dr Michael Hibner in the States and his patients have good results. I know that he is very expensive though. I am really confused and would like to ask anyone to share their post surgery experiences with Professor Carlstedt. There are rumours he may be retiring. Is this true? Is there anyone out there who has had recent decompression surgery with him? Some surgeons use MRI/MRN scans OR electrophysiological tests to determine pudendal lesions. Does Professor Carlstedt use any such preliminary tests? I am thinking of having Dr Potters MRI scan in New York to pin point the lesions before going for surgery.Pudendal decompression surgery is a very expert area and so I really do want surgery from an experienced surgeon no matter what the cost as life is such a struggle and on a downward spiral.
Does anyone know the costs per side for this surgery with the Nantes team or Dr Michael Hibner?
Does anyone know the costs for Dr Potters MRI scan ?
Does Dr Michel Hibner do redo surgery for people who had the transgluteal pudendal surgery? I feel the Uk is really lacking expertise in this area and there are probably a lot of people suffering from the problem who have been told they have "Chronic Pelvic Pain". Many are having to self diagnose this awful condition. There really should be more awareness of this dreadful condition.Its such a horrible condition and there is no other pain like it. You often feel like you are suffering in silence. I am grateful for this website and being able to share my experience and ask questions.
I would be grateful for any responses to my questions.
I am new to the website and I just wanted to know of anyone who has had surgery with Professor Carlstedt in the UK. I have terrible burning pain the perineum and sitting is unbearable. I am on pregabalin, tramadol and butrans patch. Nothing really helps.I have had 2 pudendal blocks and only responded partially to the second. The pain is so intense now and I am considering surgery. I am really not too sure which surgeon to choose. I know Professor Carlstedt is a very experienced surgeon and is the only person in the UK performing pudendal decompression surgery. However, the Nantes team in France were the pioneers of this kind of surgery. I have also read a lot about Dr Michael Hibner in the States and his patients have good results. I know that he is very expensive though. I am really confused and would like to ask anyone to share their post surgery experiences with Professor Carlstedt. There are rumours he may be retiring. Is this true? Is there anyone out there who has had recent decompression surgery with him? Some surgeons use MRI/MRN scans OR electrophysiological tests to determine pudendal lesions. Does Professor Carlstedt use any such preliminary tests? I am thinking of having Dr Potters MRI scan in New York to pin point the lesions before going for surgery.Pudendal decompression surgery is a very expert area and so I really do want surgery from an experienced surgeon no matter what the cost as life is such a struggle and on a downward spiral.
Does anyone know the costs per side for this surgery with the Nantes team or Dr Michael Hibner?
Does anyone know the costs for Dr Potters MRI scan ?
Does Dr Michel Hibner do redo surgery for people who had the transgluteal pudendal surgery? I feel the Uk is really lacking expertise in this area and there are probably a lot of people suffering from the problem who have been told they have "Chronic Pelvic Pain". Many are having to self diagnose this awful condition. There really should be more awareness of this dreadful condition.Its such a horrible condition and there is no other pain like it. You often feel like you are suffering in silence. I am grateful for this website and being able to share my experience and ask questions.
I would be grateful for any responses to my questions.
Re: Post Surgery update.
I can only answer a few of your questions but here is what I know.
1. Dr. Hibner does do redo surgeries. I think he might be the only surgeon who will do a redo.
2. Cost of MRI with Dr. Potter can be priced at 2 levels. They can do a scan that is cheaper and cost about $1500.00 and then the full scan is about $2500-$3000.00. You can email and double check the exact cost as these amounts about 1 year old so they may have increased.
3. When you ask regarding the cost of surgery with Dr. Hibner it is just not his cost but hospital, anesthesia, wound vac, botox and anything you might need. If money is a problem the hospital does have a program that will help cover the medical bill. I do not know what the financial requirements are. The stay is 1 week so hotel and meals will vary depending on where you stay. The hospital has rates with local hotels that range from about $69.00/night to $150.00/night. When I went for my surgery we found a small guest house about 5 minutes from the hospital on HomeAway.com that cost us about $650.00 for 10 nights.
Hopefully, someone will be able to post the cost for you and answer your other questions.
1. Dr. Hibner does do redo surgeries. I think he might be the only surgeon who will do a redo.
2. Cost of MRI with Dr. Potter can be priced at 2 levels. They can do a scan that is cheaper and cost about $1500.00 and then the full scan is about $2500-$3000.00. You can email and double check the exact cost as these amounts about 1 year old so they may have increased.
3. When you ask regarding the cost of surgery with Dr. Hibner it is just not his cost but hospital, anesthesia, wound vac, botox and anything you might need. If money is a problem the hospital does have a program that will help cover the medical bill. I do not know what the financial requirements are. The stay is 1 week so hotel and meals will vary depending on where you stay. The hospital has rates with local hotels that range from about $69.00/night to $150.00/night. When I went for my surgery we found a small guest house about 5 minutes from the hospital on HomeAway.com that cost us about $650.00 for 10 nights.
Hopefully, someone will be able to post the cost for you and answer your other questions.
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
-
helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Post Surgery update.
Hi Layla,
Here is Prof Carlstedt's private practice website http://www.londonnervecentre.co.uk/thomas_carlstedt.php You can contact his secretary on there. There are about 3 people (and probably more) who have posted on here that have had pudendal surgery with him. Johnd.h the most recent, I know he used his medical insurance towards the cost of surgery but have no clue how much it would be. You have obviously read his thread here, it's a while since he posted as he was doing rather well and getting on with his life I guess (good for him)
Jane may be able to answer your questions re Prof C better. I do remember a post of her's saying about nerve testing with him.
There is 'The Bristol Team' too. They trained under Prof Robert in Nantes but we have no first hand experience here of anyone who has undergone surgery so far there. They are based at Frenchay hospital and your first contact would probably be Dr Greenslade either privately (£200) or NHS some months wait.
There are a few options in Europe, see the home pages. I know of one lady who recently had the op in Istanbul, at a cost of £8,000 and is doing very well .
However I think your idea to get a Hollis Potter scan is probably the best first step. Identifying the area of entrapment could dictate a certain surgical approach (if the dorsal root was entrapped for instance) which only some surgeons will be able to help you with.
If you were considering the NHS, I would set the ball rolling now and get an appointment with Dr Baranowski for Prof C or Dr Greenslade (Bristol) preferably a private consult initially as the NHS transfer is usually easy enough and nudges you further up the queue. Dr B has about a year wait if NHS at the last report.
It looks like you have done a lot of research so far anyway and probably know all of this
. It is so good that you have found HOPE, I know this forum and the people here have helped me immensely, hopefully we can advise and help you too.
Good luck and keep us informed how you progress.
Here is Prof Carlstedt's private practice website http://www.londonnervecentre.co.uk/thomas_carlstedt.php You can contact his secretary on there. There are about 3 people (and probably more) who have posted on here that have had pudendal surgery with him. Johnd.h the most recent, I know he used his medical insurance towards the cost of surgery but have no clue how much it would be. You have obviously read his thread here, it's a while since he posted as he was doing rather well and getting on with his life I guess (good for him)
Jane may be able to answer your questions re Prof C better. I do remember a post of her's saying about nerve testing with him.
There is 'The Bristol Team' too. They trained under Prof Robert in Nantes but we have no first hand experience here of anyone who has undergone surgery so far there. They are based at Frenchay hospital and your first contact would probably be Dr Greenslade either privately (£200) or NHS some months wait.
There are a few options in Europe, see the home pages. I know of one lady who recently had the op in Istanbul, at a cost of £8,000 and is doing very well .
However I think your idea to get a Hollis Potter scan is probably the best first step. Identifying the area of entrapment could dictate a certain surgical approach (if the dorsal root was entrapped for instance) which only some surgeons will be able to help you with.
If you were considering the NHS, I would set the ball rolling now and get an appointment with Dr Baranowski for Prof C or Dr Greenslade (Bristol) preferably a private consult initially as the NHS transfer is usually easy enough and nudges you further up the queue. Dr B has about a year wait if NHS at the last report.
It looks like you have done a lot of research so far anyway and probably know all of this
. It is so good that you have found HOPE, I know this forum and the people here have helped me immensely, hopefully we can advise and help you too.Good luck and keep us informed how you progress.
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: Post Surgery update.
Hi Helen , that lady who recently had the op in Istanbul, has she had the TG approach op
many thanks
Carla
many thanks
Carla
Re: Post Surgery update.
Hi
Thank you Nyt AND helenlegs 11 for your input.
I think I will go and have this scan from Dr Potter in New York.
I have heard great things about Dr Hibner using new techniques ie he sews up the ligament to prevent pelvic instability and uses a nerve sheath to prevent the nerve being stuck down again. I know that other surgeons do not do that. It makes sense that for any surgery deep in the pelvis there is at risk of further adhesions/scar tissue developing and the nerve sheath sounds like a good idea. I wonder if this reduces redevelopment of symtoms ? I am not sure why this technique is not being used by others. AsI live in the UK, I am a little concerned that it may take several visits before Dr Hibner agrees to do surgery not to mention the long waiting time to see him. You mentioned there may be some kind of payment plan/ help for surgery with Dr Hibner. Is this only available for residents in the States?
Thank you Nyt AND helenlegs 11 for your input.
I think I will go and have this scan from Dr Potter in New York.
I have heard great things about Dr Hibner using new techniques ie he sews up the ligament to prevent pelvic instability and uses a nerve sheath to prevent the nerve being stuck down again. I know that other surgeons do not do that. It makes sense that for any surgery deep in the pelvis there is at risk of further adhesions/scar tissue developing and the nerve sheath sounds like a good idea. I wonder if this reduces redevelopment of symtoms ? I am not sure why this technique is not being used by others. AsI live in the UK, I am a little concerned that it may take several visits before Dr Hibner agrees to do surgery not to mention the long waiting time to see him. You mentioned there may be some kind of payment plan/ help for surgery with Dr Hibner. Is this only available for residents in the States?
-
helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Post Surgery update.
No Carla it was transperineal and done laparoscopicaly. His name is Prof Dr Tibet Erdogan http://www.uroloji-laparoskopi.com/eng/main-Main.html. To be honest I couldn't see any reference to nerve decompression surgery when I glanced at the web site. This particular person was extremely pleased 2 weeks post op thats all the info I have. I don't know if anyone else has heard of him.
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: Post Surgery update.
Thanks Helen I'll have a look.
Carla
Carla
-
helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Post Surgery update.
Carla if you want more info about the lady in question or the doctor she has posted on a British site. You can find the topic here http://www.pelvicpain.org.uk/forum/viewtopic.php?t=306
This seems to be a new doctor?? (well I had never heard of him) who is offering pudendal decompression surgery.
This seems to be a new doctor?? (well I had never heard of him) who is offering pudendal decompression surgery.
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.