Health Organization for Pudendal Education

Hi Violet,

I am not well at all.I started well after my decompression surgery in my right calf of tibial and sural nerve after my decompression surgery back with Dr. Eric Williams in August of 2013.Since April,2014 I have started issues with my SIJ and progressively my SIJD has become worse.I have developed bilateral pain at my Posterior Superior Illiac Spine and as well as hoorible sciaitc pain especially on my left side.

I have only my Sacrospinous ligament severed by the incompetent liar Tibet Erdogru but still developed SIJD which itself is horrible.I am very sad and depressed at the moment.My only option is to have my SIJ fused because it has become hypermobile.

It is rather criminal for the PN doctors to sever any ligaments .

I did return to work but physically I am in worse condition when I went on disability in 2010 because of SIJD and sciatic nerve pain which I never had before my surgery with the incompetent Turkish doctor Tibet Erdogru.


Regards,
Ali

AliPasha1 wrote: I have only my Sacrospinous ligament severed by the incompetent liar Tibet Erdogru but still developed SIJD which itself is horrible.I am very sad and depressed at the moment.My only option is to have my SIJ fused because it has become hypermobile.

Hi Ali,

Didn't Dr. Bautrant sever your SS ligaments? He did mine but I already had hypermobility before surgery so I don't think having the ligaments cut caused my SI joint problems. Maybe you could try prolotherapy first and see if that helps so you can avoid another surgery. I had several prolo treatments and it helped enough to where I don't really notice the hypermobility now unless I do some kind of heavy exercise.

Violet

Hi light,
That is not true that four out of six got better.Frankly,nobody did.please stop propagating for that incompetent quack Tibet Erdogru.


Thank you ,
Ali

Just figured i would add to this.

I think mind body can be a part of this condition but i do not think it is the cause. I also think it can be dangerous because it can steer a lot of others away from actual treatment that CAN help.

If people want to do mind body as a supplement to their treatment, totally. But to ONLY do mind body i think is dangerous. The mind is powerful for sure, but if we could just think away problems like this we wouldn't need doctors.

I think PN sufferers definitely need to reprogram themselves after how much PN alters your body chemistry and how it functions overall. But i think this is a chicken or the egg issue. I personally think PN causes your body to compensate in tons of ways that need to be reversed after surgery to get truly better. Which is why after surgery you have to keep going to therapy and keep working towards getting better and retraining your body.

I think this retraining can only be done though once the nerve issue is resolved otherwise the issues will just keep coming back.

EX. i keep getting a tight pelvic floor every few months after therapy. Every time my therapists gets my pelvic floor where it belongs, and it goes right back out of swing again because the NERVE is what the root cause is i believe. It's making me tighten up because i am always in pain. No matter how much therapy i do it won't fix the problem and i will just end up with a tight pelvic floor again.

Surgery isn't just a silver bullet.

These are the stats i got the other day for TG.

50% of patients will see a 75% or more decrease in symptoms. But could take up to 2 years.

30% of patients will see up to a 50% decrease in symptoms

20% will see no change and getting worse i was told is significantly rare

Only one ligament is cut (sacrospinous i think), the rest are windowed and heal much better now and don't cause pelvic instability anymore.

I will say i find it very hard to believe you got better from mind body alone and your other therapy and surgery had NO part of it.

And with a few thousand total surgeries done ( Conway alone has done over 500 of these) i don't think the forum is a good way to judge success of surgery.

People come to this forum because they are totally lost and miserable. I know thats why i did, i had nowhere else to turn. I don't know many stories of people coming back to share their positive outcomes. They exist but happen very infrequently.

I LOVE this website but i also think going to much online can be toxic. Everyone heals differently and is going through a unique experience.

So where are the "other" few thousand patients going through this that don't ever show up on this forum? Are they doomed to a life of pain or is it possible these people got better and moved on with their lives after the surgery.

I know i only have seen a few dozen people on here since i started 2 years ago who have had decompression surgery done. That's a very small sample of all the surgeries ever done. And a decent amoount of them got better. Maybe not cured. But at least better.

All i am saying is don't just rule out surgery. There ARE people who were cured from it, or made significantly better.

Get well everyone