IPPS and Erdogru

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carolynm
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Joined: Fri Jul 22, 2011 4:25 am
Location: CO

IPPS and Erdogru

Post by carolynm »

Dr. Tibet Erdogru presented his PN laparoscopic procedure today at the IPPS conference in Chicago. Both Dr. Hibner and Antolak were there and he spoke with them personally. It will be interesting to see if anyone in the US is inclined to learn this procedure.

Cm
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
lightmail
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Joined: Mon Sep 12, 2011 6:19 am

Re: IPPS and Erdogru

Post by lightmail »

I wonder if they are going to want to invest in the time it will take to become skilled at this. I would think it would be hard...Robert
AliPasha1
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Re: IPPS and Erdogru

Post by AliPasha1 »

Hi Carolynm and Robert,

It will depend again on the sugical results of Dr. Tibet Erdogru.As we are well aware that out of his 5 non-Turkish patients, 2 have shown improvement or are pain free while the others are struggling with considerable pain , no improvements and complications.That seems like a 40% improvement/cure rate at the moment.

Take care,
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
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Karyn
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Location: Lowell, MA

Re: IPPS and Erdogru

Post by Karyn »

Hi Ali,
Welcome back to HOPE! :D
It is my hope that you will be one of Dr. Erdogru's successes. Time will tell ...
I'd be very interested in Dr. Antolak and Dr. Hibners thoughts regarding the laproscopic approach to PN decompression. They're both adept with pelvic, laproscopic surgery.
Warm regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
molly
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Re: IPPS and Erdogru

Post by molly »

Hi Ali,

I do agree with what hou have said. To the best of my knowledge Iwas Dr Tibet,s first non turkish patient. I am now nearly six months post op and have made roughly 25 3o%improvement, most of this in the last two months. I am naturally pleased with this and hope given time Iwill continue to make progress.

However what Ido not understand is according to Dr Tibet most of his patients make the biggest improvement in the first month. Whilst Ionly have basic knowege ofdamaged nerves Icannot understand how so many people can improve so quickly. Didhe show you these charts on his pc?

I do know his results are not independandly reviwed,but apart from the Nantes team Ido not think any of the other surgeons are either.

The one piece of advise Iwould give to anybody going to Turkey for surgery is take plenty of pain relief as Iwas definitely unprepared in this respect.

Given the longer time frame of recovery it is going to be quite some time before a good picture of Dr Tibet,s results on his non turkish patients becomes clear.

I hope you are doing well.

Regards Molly


I
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Karyn
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Location: Lowell, MA

Re: IPPS and Erdogru

Post by Karyn »

molly wrote:However what Ido not understand is according to Dr Tibet most of his patients make the biggest improvement in the first month. Whilst Ionly have basic knowege ofdamaged nerves Icannot understand how so many people can improve so quickly
I don't understand this, either, Molly. With viewing Dr. Tibet's PC charts, what time span was encompassed? There have been patients of the more "traditional" surgical approaches who felt much improved immediately after surgery (I wasn't one of them ;) ), only to have their pain resume. I'm not sure why this is: maybe because of the anesthesia used to bathe the surgical site has worn off?
molly wrote:Given the longer time frame of recovery it is going to be quite some time before a good picture of Dr Tibet,s results on his non turkish patients becomes clear.
I agree. It's impossible to tell if a decompression was successful after only a few weeks/months. I'm very excited to hear that you feel you are improving, albeit slowly, which really is normal. I sincerely hope this trend continues for you! :P
Kind regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
molly
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Joined: Wed Aug 29, 2012 7:58 pm

Re: IPPS and Erdogru

Post by molly »

I cannot be quite sure over what time length we are referring to. Dr Tibet follows patients up at six weeks and then three mo thly for two years. The chart I remember was the first three months, this showed the most improvement in the first month for most people. As he has only been doing this advanced technique , for just over a year at the time Iwent it is a fairly short time frame.

Hope this makes sense.

Regards Molly
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Karyn
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Location: Lowell, MA

Re: IPPS and Erdogru

Post by Karyn »

Hi Molly,
Thank you for your reply. :)
Yes, you did a fabulous job of presenting the information.
I'm failing to grasp the concept of "most improvement in the first month", though. However, I'm pleased to hear that Dr. Tibet is making an effort to follow the progress of his patients.
Kind regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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helenlegs 11
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Location: North East England

Re: IPPS and Erdogru

Post by helenlegs 11 »

I remember a lady who was Turkish but had previously moved to England (and married an English guy, I think) who may have been one of his first patients, at least a year ago. I think she did a sponsored run for a British pelvic pain charity around this time last year, post surgery.
She had reported that she was 'fine' after a shortish recovery time and probably really well now.
As you say time, and (some) people with a more complex presentation, will determine if this approach is going to be appreciably better than the more traditional surgery.
It will be fantastic if Dr Tibet can achieve good long term results.
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.
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Violet M
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Re: IPPS and Erdogru

Post by Violet M »

He Ali and Molly, I have to say both of you were rather brave to be heading off to Turkey for surgery from someone relatively new on the PNE scene. I was one of Bautrant's early US patients and now that I look back on it I wonder if I would be brave enough to travel half-way across the world to a surgeon I knew very little about again. I guess that's what PNE does to you. I have no regrets about going to Bautrant and even if I hadn't improved I would not regret it because it's the kind of illness that you just have to do everything you can to try to get better. Anyway......wishing you both a full and complete recovery!

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.
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