Hey, it's GregT from tipna. I had read where Karyn just had her surgery in the last day or so. I know that she had it with Dr. Conway, but I'm wondering if she had the TIR or the TG surgery. Finally, does anyone know what reason she had the surgery with Dr. Conway, whether it was because she liked Dr. Conway, she wanted the TIR surgery, her 3 Tesla pointed to the alcock's canal, etc.
Wishing Karyn good luck with her recovery and thanks to anyone who can answer my questions.
Greg
Karyn's surgery
Karyn's surgery
Had surgery in Nantes, France in 2001 with Professor Robert. I advocate physical therapy with PTs who specialize in the pelvic floor. I also advocate injections to help diagnose PN and I am in favor of having PN surgery to release the nerve when the diagnoses points to an entrapped nerve.
Re: Karyn's surgery
Hey, nice of you to check on Karyn. She's a sweet lady. She had bilateral TG surgery with Conway. She is home now. I haven't talked much with her, but he did find pathology on both sides. I will wait for her to post more on it. I don't know enough about the exacts to post. I need to call her tomorrow. She is a strong woman.
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
Re: Karyn's surgery
As I recall from her posts, Karyn mentioned that she did not want to go through any more preliminary steps that Dr. Hibner usually requires such as botox and the QN pain pump since she was already certain about her diagnosis and knew that surgery was the next step for her and that she didn't want to wait any longer. She also mentioned that she was favorably impressed by Dr. Conway and felt he was the right choice for her. She is of course the best person to speak to her thought process concerning her selection and we all look forward to hearing from her and wish her a successful and rapid recovery.
Don
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: Karyn's surgery
Thank you both. Does Dr. Conway use some of the changes to the traditional TG that Dr. Hibner does? I hate to see people having to wait so long for Dr. Hibner because he only does one surgery per week.
Greg
Greg
Had surgery in Nantes, France in 2001 with Professor Robert. I advocate physical therapy with PTs who specialize in the pelvic floor. I also advocate injections to help diagnose PN and I am in favor of having PN surgery to release the nerve when the diagnoses points to an entrapped nerve.
Re: Karyn's surgery
No, Dr. Conway rejected Dr. Hibner's ideas and went with what he learned from Dr. Antolak. Also he'll do a bilateral, unlike Dr. Hibner, who has patients come back to have their other side done later.GregT wrote:Thank you both. Does Dr. Conway use some of the changes to the traditional TG that Dr. Hibner does? I hate to see people having to wait so long for Dr. Hibner because he only does one surgery per week.
Greg
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
-
HerMajesty
- Posts: 1134
- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: Karyn's surgery
Celeste,
This is what I am really waiting for...remember our discussion as to whether Dr. Potter is finding only significant pathology on her MRN's or also artifact?
I know Karyn did not go into this expecting a complete cure, because her 3T showed issues with the dorsal nerve etc which are not being addressed in this surgery...I want to see if this turns out to be a complete cure. hoping and praying it is!
I think this would give some valuable info about the significance of the 3T; I think both of us suspect that while it does show real pathology, it might also show artifact that can discourage action in patients that are told they have scarring in areas that are not traditionally decompressed.
This is what I am really waiting for...remember our discussion as to whether Dr. Potter is finding only significant pathology on her MRN's or also artifact?
I know Karyn did not go into this expecting a complete cure, because her 3T showed issues with the dorsal nerve etc which are not being addressed in this surgery...I want to see if this turns out to be a complete cure. hoping and praying it is!
I think this would give some valuable info about the significance of the 3T; I think both of us suspect that while it does show real pathology, it might also show artifact that can discourage action in patients that are told they have scarring in areas that are not traditionally decompressed.
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: Karyn's surgery
I honestly don't know what to suspect about what is shown in a Potter image, because her computer software that generates these results can't be validated by anybody else in the field. Patients and doctors either take her word for it, or they don't. I think the result of a Potter scan could certainly convince somebody not to pursue treatment based on their belief in it. I also think that not all scar tissue/artifact is created equal. Some will cause a problem, some will not. Some may exist for a long time without ever causing a problem...or some may be there all along, and only at some point in time may it become an issue. I think people are very quick to blame it, sometimes even without proof that it exists. It's very controversial, and I'm not even sure that scar tissue has been studied on its own.HerMajesty wrote:Celeste,
This is what I am really waiting for...remember our discussion as to whether Dr. Potter is finding only significant pathology on her MRN's or also artifact?
I know Karyn did not go into this expecting a complete cure, because her 3T showed issues with the dorsal nerve etc which are not being addressed in this surgery...I want to see if this turns out to be a complete cure. hoping and praying it is!
I think this would give some valuable info about the significance of the 3T; I think both of us suspect that while it does show real pathology, it might also show artifact that can discourage action in patients that are told they have scarring in areas that are not traditionally decompressed.
In any case, of course I wish Karen gets a cure. I always have!
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
Re: Karyn's surgery
Dr. Potter's results have been validated by Dr. Olga Kalinkin who works with Dr. Potter as well as Dr. Oskar Aszman's radiologist as well as Dr. Noor Gajraj who is my Pain Management doctor.
We have two or three confirmations now from Dr. Hibner,One Italian guy from Dr. Bautrant and one dorsal Nerve decompression from a German friend who had dorsal nerve decompression surgery from Dr. Aszmaan and is doing great.He has achieved full erection in ten days and 30-40% of his Penile sensation back as well.
The question about scarring is debatable because the question is thickness of the scar and how it much is restricting the movement of the nerve.That will also depend on the symptoms of the patient that how much pain he is.The MRI once again is a diagnostic tool.The symptoms give a full picture of the MRI.
We have two or three confirmations now from Dr. Hibner,One Italian guy from Dr. Bautrant and one dorsal Nerve decompression from a German friend who had dorsal nerve decompression surgery from Dr. Aszmaan and is doing great.He has achieved full erection in ten days and 30-40% of his Penile sensation back as well.
The question about scarring is debatable because the question is thickness of the scar and how it much is restricting the movement of the nerve.That will also depend on the symptoms of the patient that how much pain he is.The MRI once again is a diagnostic tool.The symptoms give a full picture of the MRI.
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: Karyn's surgery
Again, you either believe it or you don't. Some have used it as an extra measure of feeling like surgery is the right action. No PNE doctor requires the test in order to treat you, though.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org