Choosing a Surgeon

Read and discuss about the many surgical options and the surgical centres Worldwide.
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GregT
Posts: 135
Joined: Mon Sep 20, 2010 6:51 am

Re: Choosing a Surgeon

Post by GregT »

Paulette,

Have you heard of any successful surgeries that Dr. Conway has performed?

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.
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A's Mommy
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Location: Pennsylvania
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Re: Choosing a Surgeon

Post by A's Mommy »

I was also told that the TG could decompress the entire Alcocks canal--
Not so much the case for me as when I went to Austria, my distal Alcocks was entrapped as well as all the perineal branches.

Things to consider....
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
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GregT
Posts: 135
Joined: Mon Sep 20, 2010 6:51 am

Re: Choosing a Surgeon

Post by GregT »

A's Mommy wrote:I was also told that the TG could decompress the entire Alcocks canal--
Not so much the case for me as when I went to Austria, my distal Alcocks was entrapped as well as all the perineal branches.

Things to consider....
AM, how is your recovery coming?

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.
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Karyn
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Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Choosing a Surgeon

Post by Karyn »

GregT wrote:Have you heard of any successful surgeries that Dr. Conway has performed?
I am one of Dr. Conways successful surgeries :D
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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GregT
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Re: Choosing a Surgeon

Post by GregT »

That's wonderful, Karyn. Was it when he was doing the TIR or TG? I never had much contact with many of his patients and honestly had never heard of any cures. (frown) I just feel that knowing actual people who've been cured by the doctor who you are having surgery with is a must in deciding on a surgeon.

Do you know of any other cures from Conway?

Greg
Last edited by GregT on Mon Jan 23, 2012 2:20 am, edited 1 time in total.
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.
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Karyn
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Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Choosing a Surgeon

Post by Karyn »

Thanks for your kind words, Greg. :P
I had bilateral TG surgery. I'm in close contact with 4 of his other patients who don't visit the board, but are also doing very well with the TG approach. One of them is having a very difficult recovery. She only had one side done and we're thinking maybe she needed a bilat.
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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GregT
Posts: 135
Joined: Mon Sep 20, 2010 6:51 am

Re: Choosing a Surgeon

Post by GregT »

Sorry, Karyn. I didn't mean to type "what's wonderful" in my above post. I changed it to "that's wonderful".

So, Conway must vary his TG approach from the traditional one, right? He must do something to preserve the ligaments, or at least the ST, right?

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.
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A's Mommy
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Re: Choosing a Surgeon

Post by A's Mommy »

Hi Greg,

Recovery is a bit of a challenge because the RSD/CRPS that I was unofficially diagnosed with after the TG by Dr. Hibner (he also unofficially dx'd me with RSD/CRPS/Central Sensitization whatever it's called) flared TREMENDOUSLY after Austria 3 months ago. All of the pain is being magnified by the wind up in the spinal cord. I am now appealing insurance for Ketamine infusions so we can really get a handle on what the pain is really like. As far as Aszmann being able to decompress the nerves, it was done very well and the pictures are there to prove it. Huge neuroma/mass of tangled/crushed perineal nerves (many perineal branches were involved) as well as the main trunk of the PN at distal Alcock's --- just as Potter's MRI had said (even though she did not specify the perineal nerve branches).

I am really happy that Dr. Hibner is continuing to make changes and modifications to his surgery: ie with the new addition of the Ketamine during and after surgery... but in my case, too little, too late and I never needed the TG anyways... Aszmann checked all the way to the posterior end of Alcock's canal just fine. So in reality, what happened was my entire nerve (from the TG approach anyways) had been "decompressed" of what probably was mostly "normal" tissues in addition to the area of "compression" found by Hibner at the entrance (posterior end) of the Alcock's canal. In hindsight, I think this traumatized my PN and set me up for CRPS -- I mean the definition of CRPS Type 2 is Nerve Injury or Trauma. THIS IS JUST MY THEORY. PEOPLE, PLEASE DON'T GO RUNNING FROM THE TG APPROACH BECAUSE NOT EVERYONE GETS CRPS. I would just implore you all contemplating surgery to pray hard about it. In 2010, I did not know about Aszmann... just as in 2002 or whenever Greg had his surgery, there was Nantes and Shafik, right? More choices every year.... this is what we pray for as patients -- more physicians - more options.

I think Dr. Hibner is a great man, physician and is being very innovative, and I am thankful that he tried so hard to help me, but unfortunately, the approach I needed all along was the one done by Prof Aszmann.

Long road ahead but I EXPECT full recovery. Shooting for the stars!!!

Thank you for asking about me, Greg.

A's Mommy
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
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GregT
Posts: 135
Joined: Mon Sep 20, 2010 6:51 am

Re: Choosing a Surgeon

Post by GregT »

A's Mommy,

I sure hope that you do reach a full recovery. Sorry I didn't notice this sooner. I've been fairly busy lately. I had surgery on a torn meniscus recently and have been spending lots of time trying to raise some puppies.

Good luck to you.

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.
paulette
Posts: 184
Joined: Sun Sep 19, 2010 6:13 pm

Re: Choosing a Surgeon

Post by paulette »

Greg,
I believe I also will be one of Dr. Conway's successful TG surgeries, and he even said it was the worst looking nerve he had ever seen!
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