Health Organization for Pudendal Education

Dear Karyn,

He said that it would take four hours but is explaination was that he was very careful because my left side was a redo.However,it seems that the laroscopic surgery takes a much longer time since the duration of the surgery of the the Finnish girl was also three hours long and it was one sided.

I find it amusing now because when Molly had her surgery ,he wrote that her surgery was a complete succcess and she is doing site seeing in Sultan Ahmet area(the historical district) in Istanbul and having a great time.


He was mad because I also mentioned that my PN nerve could have got nicked or damaged at the sacral plexus during the surgery and he said that I was being critical of his surgical approach which is the best in the world.However,my tibial and peroneal nerves did get damage during the surgery which was proven by the Nerve Conduction velocity test which i recently had and they do originate from the sacral plexus.The neurologists aren't ruling that possibility out.He asked me not to email him anymore but pm or discuss openly on facebook to which I replied that due to HIPPA rules in the USA,I am not going to discuss my case in front of three hundred people on a public forum.

To my understanding,he just looks at the Sacral plexus for any pathologies.

I want to be clear about one thing that he is very passionate about his laroscopic surgery and he does believe that this is the answer to PN enigma and he does get upset when complications arise or people are being critical of it.Maybe ,he will learn with time and experience.

I just wanted to sit again but now I cannot even walk.My life is destroyed now for certain.I just wanted to get well and i can't even walk now and have to deal with SIJD beause of the severing of SS ligament.

Kind Regards,
Ali

Hi Karyn,

My surgery was unilateral so a very long time for just one side. I don,t think I ever had an explanation of why it took so long, other than it was a difficult surgery with a vety impacted neve at the ligament grip. On top of this the source of bleeding had to be found and dealt with.

Dr Tibet has continued with correspodence when Ihave made contact, and Ireally feel it would be a great shame if this surgery was,nt pursued in the future as it is generally as in other forms of major surgery the way forward.

At the moment I feel my recovery is taking more the shape in time terms as the TG approach.

I will continue to let you know how Igo.

Kind regards

Molly

molly wrote:Dr Tibet has continued with correspodence when Ihave made contact,\

AliPasha1 wrote:He asked me not to email him anymore but pm or discuss openly on facebook to which I replied that due to HIPPA rules in the USA,I am not going to discuss my case in front of three hundred people on a public forum.

Molly - Is this how you communicate with him, as well?

AliPasha1 wrote:He was mad because I also mentioned that my PN nerve could have got nicked or damaged at the sacral plexus during the surgery and he said that I was being critical of his surgical approach which is the best in the world.

Well, just as he may have been premature immediately declaring your surgery a success, I think it's possible you may have been equally premature in deeming it a failure by implying he may have nicked the nerves of your sacral plexus. There's no doubt that what happened to you is horrible and very unfortunate. However, I hope Dr. Tibet will resume a level of professionalism and respond to your correspondence.
Again, I really do understand how very upsetting this all is; but it's too early to throw in the towel and declare that your life is destroyed. You still have a chance of recovery.
Please believe that ....

molly wrote:At the moment I feel my recovery is taking more the shape in time terms as the TG approach.

Molly - I hope you continue to improve, too! I acknowledge the statement I'm about to make is highly debatable, but I don't personally feel laproscopic surgery is any less invasive, painful or difficult to recover from. Regardless of the approach, the nerves are still being decompressed/handled and surrounding structures are still being disturbed.

I want my foot back and I want to walk like normal people.

AliPasha1 wrote:I want my foot back and I want to walk like normal people

Yes! I want both of my legs and feet to work properly, so that I may walk like normal people, too. The prognosis from the doctors you're currently seeing is good, Ali.
Since your surgery, you've experienced increased sensation in these areas. You do have motor function. While I agree this never should've happened to you in the first place, you are improving with your lower extremities; where as I continue to decline. It is my hope for you that instead of allowing this anger to fester, that you will compare your situation to how you were feeling post-op, and what your limitations were; to how you're feeling today and each new day.
Hugs,
Karyn

Ali, keep the strength, thinking about you buddy...
Thats devastating reading. Enough for me not to contemplate neither laparoskpic nor classical operation any more...
Maybe your situation will somehow calm down, maybe some long acting anestetic block will help you in the future.
When I had ECSW bcak in January 2011 in my groin area, the subsequent flare up lasted 4 months and I was sure that my life is over...Nothing in my life I regreted more than that hellish ECSW wave...
Then pain turned back to baseline values with some worsening, but nothing irreversible. Maybe you will after several weeks-months also go back to your pre-op status. Keep the faith buddy...

I know that my situation is not comparable with you. Despite the daily pain, I am functioning pretty normal, having had pretty good summer with daily pain at level 2-3...
and more dull, mucular then nerve pain...I even played tennis twice, with some moderate flare up, nothing excruciating.

Now I am getting worse, this wet, cold weather is killing me...
Started new PT, with some intrarectal trigger point release, will see after 5-6 sessions what s going on.
Never mind, I got a feeling, that if one doesnt have clear cut pathology imposed by some injury, pelvic operation etc., then surgery is extra-highly risky business.
None of the described approaches has at least favourable outcomes.

Flyer28

Hi Karyn,

Yes Iwould agree in hindsight that the laparoscopic approach is still invasive and painful. However compared to open surgery and damage to surrounding tissues especially with the use of robics, it has to prefereble to open surgery IF good results can be achieved. If however i5 becomes apparent that the lap approach is inferior due to access and effectability that would definitely be detrimental.

Kind Molly
T

Ali.. Didn't Lisa have some what a succes with the surgery? I noticed you didn't mention her..Just curious...Robert

Robert,

I did mention her in my earlier post when I wrote that two have shown improvements since she isn't cured yet and is on her way to recovery.I didn't mention her name.I beleive that you missed it.Lisa is the psoter girl of Dr. Tibet right now who is doing well.I was also asked to interview for a Turkish News channel for Dr, Tibet just to show that he is getting patients from the USA.With thrombosis,increased pN pain,damaged peoneal and libial nerves I politely declined because it made no sense much to the dismay of Dr. Tibet.The finnish girl did a good publicity interview and her picture was taken but it was against my principles.I would have given a thousand interiews if I ahd seen any improvements.

The ldy from Utah wasn't asked for any interviews.

Take care,
Ali

Ali, thank you for posting your detailed experience in Turkey. It is important for all us to have both sides of the story. My heart goes out to you that you are worse. I hope with time that things settle down. Have you considered trying some Ketamine or Lidocaine infusion treatments to see if some of your pain is central in origin? Big HUG sent to you and prayers.