Health Organization for Pudendal Education

Ali,
It appears you may have developed "well leg compartment syndrome" from your surgery.
http://www.ncbi.nlm.nih.gov/pubmed/16085748

http://openanesthesia.org/index.php?tit ... rve_Injury

http://www.tititudorancea.org/z/lithotomy_position.htm

This may be one of the reasons why US surgeons aren't performing the laproscopic approach for PN decompressions. Due to the length of surgical time; it appears this approach is very dangerous to patients.

I still have hope for recovery for you, Ali.
Hugs,
Karyn

Hi,

No improvement from PN surgery.Infact,rght side PN sitting pain is worst.I am also getting numbness feeling in my rectum again.Tibial nerve surgical comlication damage in the leg and foot is still bad.I have severe pins and needle sensation all over my feet and partially my leg.I can't still walk much.

I am very disappointed with Dr. Tibet Erdogru at the moment and wouldn't recommend anyone to go to him.If you have complications after surgery,the Memorial hospital isn't equipped to handle it.I know there are some nut-cases epecially someone from croatia called anita who is glorifying him on facebook but people should think really hard before going to Istanbul.

I made a huge mistake and am far worse at the moment than pre-surgery.

Thanks,
Ali

Ali, I am so sorry to hear about your continuing pain and problems. I hope you do show signs of improvement soon, but I have got to say that it is still early days (although I'm sure that you have heard that expression so many times now)
I think that Dr T's problem is that he somehow has allowed his patients to get the wrong idea about recovery. Maybe it's not totally down to him individually? more the spirit of determined and not unwarranted desperation, social sites allow. In matters like this I don't believe there is a 'wave' to be ridden as such, the problem being that the tide will turn.
Different people have different presentations and of course the more complicated cases will take longer in surgery and therefore a longer time to see benefits.I sincerely wish that you do see some benefit soon.
I am grateful for your factual accounts, I just wish it could be different for you, you have done so much to help yourself out of this situation. No one could have done more.
There could be all sorts of reasons why your tibial nerve is problematic now, from a problem at the sacral plexus, anywhere along the sciatic nerve, a piriformis issue? You may never know (I would doubt imaging would help identify it) Perhaps your tibial branch of the sciatic, forks higher up than some? Or it is just 'that side' of the sciatic nerve that has some compression now??
It sounds as if inflammation may be playing a part in your symptoms, I hope this settles, as it should (sooner rather than later of course) hopefully that could make a good deal of difference for you.
I have a major foot and heel component to my pain (no inflammation however) The sole of my left foot and toes have been totally numb for 5 years now (I can feel my big toe tho' ) and the pain that builds up in my heel is best not talking about in polite company!! so I can identify to some extent perhaps.
I remember Anita from here and presume that her problem was an easier fix Ali. Dr T. does have some more instant successes, that's undoubted. I'm extremely glad for them.
Molly, I can only hope that you continue to improve. I would not wish your struggles on anyone but I too admire your bravery, stoicism and tenacity. Stay strong.
Take care,
Helen

Ali, I'm sorry you are not seeing any improvements from surgery yet and that you are feeling worse. I remember the conversation we had before your surgery -- that surgery is a gamble. That is the sad truth for PNE patients. Now you are in a fight to get your mobility back. Are you able to get physical therapy now to help you in that fight?

Violet

Hi Violet,

Nice to hear from you again.I an doing PT and being also looked after by some competent doctors.The debate is whether Tibte nicked the S1 Sacral root or the tibial nerve got damaged because he kept me in the lithotomy position for more than 4 hours.The nerve conduction test shows tibial nerve damage but I am planning to get a Sacral MRI or a nerve block at L5/S1.Either way,Tibet has put me in great trouble and pain due to his carelessness during the surgical procedure.

Sitting was an issue and now walking is a nightmare .

Take care,
Ali

Hi,
I'm posting this FB update regarding Dr. Tibet on behalf of Ali. If you don't have a FB account, don't bother clicking on the link from where the post came from:

This is the text from Tibet's Poster girl.She is back to square one after five months.You can post this on hope.

http://www.facebook.com/HelpLisaFightPN


This update is long overdue and unfortunately, it’s bad news.

Lisa started a job two week ago as she has huge debt, has no income, and has had very little financial support after the surgery. The work was too much for her body. Now her ne...
rve pain is back and some other PN symptoms. She is in bed and can hardly walk... she has to quit the job...

This is all because of her damaged pudendal nerve. We all knew that there were no guarantees with experimental nerve decompression surgery, and that her only hope was to get that nerve healed. We put together a plan for healing, which included the surgery in Turkey. But she wasn’t able to follow through with the rest of the plan of aggressive natural therapies, due to lack of resources.

She gives her best effort to fight each day. But it’s a difficult battle. Her central nervous system is a mess due to PN, and her fibromyalgia isn’t a help. She is fighting hard to rebuild her life while she is still healing, but her body isn’t cooperating. Seems it still needs all its energy for healing. She wants her story to have a good ending and be inspiration to others… Please keep her in your hearts and prayers.

Please try to help her any way you can. She’s worth it. She really needs it as she can't work and has no income. She has been denied disability and is in the final appeal process. It doesn’t look good since PN is not a recognized disability and even the so-called experts don’t really know about it. Her own PN specialist failed her.



Thank you,
Ahmet

That's really sad, Karyn. I'm assuming she must have been doing well initially? Sorry, I don't go on facebook because I don't like their privacy policies so I appreciate you posting this.

Ali, keep fighting, man. Hopefully this is not a sacral nerve issue and with time the tibial nerve will regenerate.

Violet

Yes, it is sad, Violet, but not surprising. I don't have a FB account, either, so Ali forwarded this post to me with the request to share it with the HOPE community. I have just editted the post to remove the "donation link". For some reason, Dr. Tibet is very enthusiastic about obtaining US patients for surgery in Turkey. According to Ali, this was his first US patient, and yes ... she was doing very well, initially.

I had not mentioned this but I had an email correspondence with Dr. Erdogru last year. I let him know my symptoms and what my mri report stated. One, I could not get it across to him that I did not have bladder mesh. He encouraged me to come there for surgery, telling me why laproscopic was better. Then about 3 wks later he sent me an email about a surgery he had just done a woman from Mississippi and included her name.
God be with you..

rea wrote:Then about 3 wks later he sent me an email about a surgery he had just done a woman from Mississippi and included her name.