IPPS and Erdogru

[AliPasha1]

Hi Violet and Molly,

I developed a lot of complications from Tibet's surgery and a lot of things went wrong.I would be posting them in detail soon.

I believe that I have also developed SIJD on my right side and its killing me.

Molly, did you have back/sacrum pain after your surgery or any signs of SIJD.

Violet, I have always taken calculated risks with these experimental PN surgeries,but this time I made a big mistake and unusual complications have arisen from the laproscopic surgery.

Details of my experience IN istanbul would be posted shortly.


Kind Regards,
Ali

[lightmail]

Hello Ali..I sincerly hope the best outcome from your recent surgery. It's been tough I know and I really appreciate your posts, letting us know about the Turkey results. I admire your tenacity and courage. Hang in there my friend...Robert

[molly]

Hi Ali,

I,m sorry you have had a rough time, but do hang on in there as you are very in the very early post op days.

Whilst Ido have some hip issues on my effected side these have developed with the pn. Whether or not they were there before Ido not know, its a bit chicken and egg.

Idon,t think Ihad sacral pain after, just screaming nerve pain. This took about 6 to 8 weeks to grt back to pre op levels.

Iwas very well aware that this is experimental surgery as to some extent are all pn
surgeries, it is a poorly understood and researched condition compared to many other medical areas. They simply do not have the sucess rates of many other surgical procedures, but as this is all we have at the moment, after exhausting conventional treatments it leaves us with Hobson,s chioce.

Ido not regret going to Turkey as Iwould have otherwise gone to France with again an unknown outcome.

Do try to allow more time to pass and try not to be too desponda t

[molly]

Sorry my computer did its own thing,

Kind regards Molly

[wendy7]

Hi guys,

Wow, I can't believe how many more doctors have come onto the scene, to help with PN. That is awesome. There are so many reports of people getting better after a month or so and then others taking up to a couple of years, to see the full recovery of their nerve. I don't know if it is a matter of how bad the nerve is damaged, if the laproscopic approach is easier on the nerve, as compared to the TG approach, where they actually tug on the nerve. So many factors to consider, but I hope that your recovery goes smooth and progresses well.

Take care,
Wendy

[AliPasha1]

Hi Wendy,

Its nice to hear from you again.I hope that you have continued to improve and have been able to sustain a normal life after your redo surgery with Dr. Hibner.

The new laproscopic surgery looks quite attactive , less invasive with 80% or more success results as reported by Dr. Tibet Erdogru.There are no controlled studies as is the case of all PN surgical approaches.In the case of Dr. Tibet all the success rates are claimed by Turkish patients and Dr. Tibet.Out of the 5 non-turkish patients(3 americans,one finnish and one British) ,two have shown improvements which includes Molly ,two have developed severe complications which includes me and the third did well for three weeks ,until all her symptoms returned after she had rough sex with her boyfriend.


I had bilateral PN surgery on the 24th of September,2012 and I thought that I was in hell for two weeks and I was going to die.I developed thrombosis,tibial and Peroneal nerve damage in my lower leg and foot and Sacro-Illiac Joint dysfunction on my right side.Everybody believes that it was caused because of the wrong positioning of the leg during the prolonged surgery of seven hours .There is also a slight chance that it happened because Dr. Tibet explored the Sacral Plexus and caused some sort of damage.Now, I can neither sit nor walk.I am walking with the help of clutches and the neurologists are hopeful but not cetain that I can ever walk again normally.

My hemoglobin level also fell from 13 to 8 after the surgery and was given 5 units of blood transfusion after much hesitation.The primary reason was that I was allergic to Heparin which was initially given for thrombosis which caused the hemoglobin level to drop drastically.However, other surgeons that I have talked to tend to disagree.I am on 5 mg Coumadin but my INR levels are all normal and the DVT is negative.The swelling is all gone but the pain has increased drastically because of the re-generatin of damaged tibial and peroneal nerves.Or maybe, its a loss of axons and I am becoming worse.

My PN symptoms such as sitting is still worse than pre-surgery and I also experienced rectal numbness and constipation for a month before it became normal.

Ironically, a lady from UTAH had surgery one week after me and she lost both sensation and functionality in both her legs.Her one leg has returned to normal, but she is still struggling with the other one and it seems that her peroneal nerve was damaged also because of the positioning or the Sacral Plexus exploration.

Dr. Tibet continues to post his success stories on facebook and tries his best to cover or hide the complications.

The finnish girl was doing pretty well until her rough sexual encounter.The only person that has really benefitted is a 45 year old woman from Indiana.

The purpose of this surgery isn't to belittle Dr. Tibet's surgical approach,but to give a realistic picture what is happenning in Istanbul,Turkey.

I had two previous PN surgeries with Dr. Bautrant and Professor Oskar Aszmann and they were normal surgeries with no complications as compared to this one.Although, I didn't benefit from them but I never felt as bad as I feel now .I believe that I have been literally disabled now.

I am still waiting for my detailed surgical report from Dr. Tibet but has yet to receive it.I am very disappointed,devastated and in a complete state of shock after my surgery in Istanbul.I went to get my PN symptoms fixed especially the sitting pain at ischial tuberosity but came out with thrombosis,tibial and peroneal nerve damage and SIJD(Sacro-Iliac Joint dysfunction) complications.

I have also developed Insomnia due to the traumatization after surgery and can barely sleep for two hours during night.Even 10 mg of valium isn't helping.One of the reasons is the foot and leg pain during night.

Only time will tell if I will ever get out of this mess and I can only pray to God for help.

I know that Dr. Tibet tried very hard during the surgery but unfortunately because of the complications I have hard time praising his efforts.

Maybe, if the complications didn't take palce, I could have something more positive to report.

kind regards,
Ali

PS

Molly,thanks for your input.karyn, thank you welcoming me back but take care of your peroneal/tibial nerve issues.

[wendy7]

Hi Ali,

Wow! What an experience you went through! I am so sorry to hear that you have gotten to the point where you feel completely disabled. I am truly sorry to hear that. Do you still have contact with Dr. Tibet? Does he give or provide any information on why you would have encountered so many post op problems? A long time ago, I remember someone posting that they ended up with PN, due to being in the same position, for a long period of time, while they were having a hysterectomy. So, your thoughts on being in the same position, makes so much sense to me. I am wondering, with such a long surgery, if there is any scar tissue that has developed, that is causing you to have the amount of pain that you are having. After my first surgery with Dr. Conway, I developed alot of scar tissue and my nerve was actually connected in scar tissue where Dr. Conway cut the ligament.

What do you think about having an MRI, to check out and see if there is any scar tissue, where he operated?

Take care,
Wendy

[AliPasha1]

Hi Wendy,

The complete disability feeling is due to the tibial and peroneal damage in the my right lower leg and foot and the SIJD pain.The PN symptoms are still bearable with slight worsening of symptoms.Although,I have tail bone pain which I never had before.


Now, I cannot drive or even wear my shoes.
I am still waiting for him to answer my emails.Inittially he did but after I reported my complications on facebook he got mad .He just wants rosy stories on facebook.It is his publicity tool.
kind Regards,
Ali

[molly]

Hi Ali,

My surgery was also very long, six hours Iwas in the low lithotomy position, and Idid wonder at the time if this contributed to some of my very severe post op pain.

I am very very sorry that you are in such a bad way, my thoughts you out to you, and sincefely hope with time you will get some improvement.

I do think it is sooo important for people,s experiences to become known for everybody,s sake, so thanks for sharing them with us.

Kind regards,

Molly

[Karyn]

Dear Ali & Molly,
Were you informed prior to the surgery that it would take so long? Were you given a reason AFTER the surgery why it took so long? Do either of you know what the "exploration of the sacral plexus" actually involves?

I am still waiting for him to answer my emails.Inittially he did but after I reported my complications on facebook he got mad .He just wants rosy stories on facebook.It is his publicity tool

I find this quite upsetting. Could you please clarify if this is your means of communication with Dr. Tibet? Are you exchanging correspondence via FB or through his office?

karyn, thank you welcoming me back but take care of your peroneal/tibial nerve issues.

Is this a brush off?????
You're welcome, Ali! I hope you'll visist the site more frequently. And you know where I stand with my peroneal/tibial nerve issues.

Only time will tell if I will ever get out of this mess and I can only pray to God for help.

This is true. I understand how difficult it is having patience, but you have had other surgeons inform you that the lower extremity nerve problems may resolve, with time.
Warm regards,
Karyn