Health Organization for Pudendal Education

Ali,
I haven't seen a post from you for awhile and am heartbroken to learn that after everything you have tried you are feeling worse
I have heard of a patient who had the S-T ligament severed by the Houston team with negative consequences, having the ligaments repaired after the fact by a general Orthopedic Surgeon. Maybe you could pursue that with the SS ligaments if you have a high degree of certainty that this is causing pelvic instability.
As you know from prior threads I am adamantly against cutting the S-T ligament; but I see the role of the SS as lesser. Are you sure this is the cause of your SIJD? When I had SIJD, I had a high degree of pelvic instability (hypermobility); but it self-corrected when the HYPOmobilities (stuck joints) within the pelvis were released. I wonder if hypomobilities might be an alternative explanation for your pelvic instability, because the SS ligament is a relatively minor player in pelvic stability.
Again, I am so sorry that you haven't yet found the help you have been looking for. You are a very well informed patient self advocate and I know you really did your homework in pursuing a cure. You deserve better.

...I posted above without reading the entire thread; just did so and so I want to make a comment about "most improvement in the 1st month". My tarlov cyst surgeon told me that due to the manipulation of the nerves, a lot of his patients have pelvic numbness in the beginning. I certainly did. It interfered with bladder and bowel function, but it gave me a blissful "I am cured!" feeling for the first month due to the numbness overriding the pelvic neuropathies. After that, it was back to the disappointing reality that nerves take a long time to heal. I am 8 months out and having a steady but SLOW recovery; the typical period to attain the maximal results from this surgery is 2 to 3 years. I wonder if the laparascopic technique also predisposes to post op numbness in some patients, which is being interpreted as "improvement"? The doctor sounds like he is more enthusiastic than he is pragmatic, so that might be how he is interpreting his data.

Ali, this is dreadful news. It seems like everything you have tried just makes you a little bit worse which I am sure must be incredibly frustrating and discouraging for you.

I'm trying to understand the rational for messing with the sacral plexus given your history. On a hopeful note, my husband had a tumor peeled off of a nerve in his face and the whole side of his face was numb for several months. He couldn't close his eye and his smile was lopsided. Over time all of the feeling and movement came back and his face is completely normal now. So my hope for you is that your leg nerves will heal and you will walk normally again (and of course your PN too!)

The articles I have read on the SS/ST ligaments agree with what Hermajesty said about the ST being considered more important than the SS in pelvic stability. As I recall, one of the reasons you chose Turkey was that Dr. Erdogru does not cut the ST -- is that right? With a bit of proper PT or manual therapy I think the SIJ pain you are describing might be fixable. Anyway, keep fighting and do what you can to improve circulation in that leg so that things will heal more quickly.

Best,

Violet

Ali,
For whatever the reason I felt like you that since surgery and cut ss ligament I started pelvic instability problems. Maybe it was because I do not have core strength to fall back on. Anyway I believe I am finally seeing some stability regained from chiropractic, Acupuncture, PT and exercises to strengthen the core. I also bought and use an SI belt for driving and cooking the ttwo activities that have me twisting. Good luck and hopefully you can overcome this issue. Janet

Hi Ali,

I also have had a lot of numbness following my surgery, and loss of sensation, in my pelvic area.

I was told this could take up to six months, and it has indeed resolved.

I am now really beginning to feel the benefits of my surgery, but patience and realistic expectations are the key words here.

I excercise gently daily and have recommenced with mu pelvic physio. Iknow how hard this time can be but please try to look at the longer term picture.

Kind regards,

Molly

Dear Molly,

My main concern is the tibial and peroneal nerve damage in the leg and the foot respectivelythat was caused during the surgery and not the PN symptoms.It has made my walking very difficult and it has come as a shock to me because I wasn't expecting it.I wore my sneakers for the first time in seven weeks and couldn't even feel my ankle and heel and the walking was extremelt difficult.

I am not sure whether Tibet nicked the nerve at the Sacral Plexux level or it was due to the positioning of the leg during the seven hour surgery.After surgery it was attributed to thrombosis but since my swelling has gone and my INR scores are normal,it was evident that here was nerve damage.I had NCV(Nerve Condcution Velocity test and it showed motor function damage at the tibial nerve at the ankle and knee level and complete loss of sensation in the Sural and Peroneal Sensational nerve on my right foot.

I am hopeful that it will also resolve with time but we can't be certain that I can ever walk like normal people again.I hold Dr. Tibet and his team completely responsible for this unnecessary complication aand I have every reason to be upset at him.The same thing happened to a lady from Utah one week after me and she is still in alot of pain.Although, she didn't exhibit any swellling or thrombosis.

As far as the foot pain is concerned,it is 9 where as PN is between 4-5 on a scale of 10.
I went for PT for both the sIJD and tibial nerve today and it helped a bit.I will keep you fellows updated.

Kind Regards,
Ali

PS

I have bought the SIJD belt and hve started wearing it.

Oh how I wish there was a good solution to PN for us all! I need one as well! I hope you recover from all you endured in surgery. Nerves can grow back! Alpha Lipoic Acid is supposed to be good for that. It is a natural supplement. There are prescription strength B vitamins as well (need rx) that is used especially in diabetic neuropathy. I would think it might help neuropathy in general?

Hi,

Tibet just posted that because I was obese that's why complications happened.If that was the case, then why didn't he tell me to loose more weight before he can operate on me.He refuses to acknowledge that my tibial nerve has been damage and also mention the lady from Uta.

It was a terrible mistake to go to Turkey and I highly regret it.
I am very upset indeed!
Kind Regards,
Ali

AliPasha1 wrote:Tibet just posted that because I was obese that's why complications happened

Ali - I can't help but notice you used the word "posted" in your statement. Are you implying that he wrote this publicly on FB?
As far as the obesity is concerned; was Dr. Tibet not cognizant of the potential complications prior to performing this less invasive approach? I'm confused. It sounds like he's blaming your complications on obesity; yet he knew your weight prior to surgery; didn't appear to take any extra precautions, and instead of informing you the approach wouldn't be your best option - went ahead anyway? Is this correct????

AliPasha1 wrote:He refuses to acknowledge that my tibial nerve has been damage and also mention the lady from Uta.

Very upsetting. What complications is Dr. Tibet referring to, if he's not acknowledging your tibial and peroneal nerve damage? The DVT? The blood transfusions?

AliPasha1 wrote:I am very upset indeed!

I don't blame you in the least, my friend. I hope PT will be able to help you regain full sensation and motor function in your lower extremities soon. I'd be very interested to hear how they're addressing your tibial nerve.
Hugs,
Karyn

AliPasha1 wrote:Hi,

Tibet just posted that because I was obese that's why complications happened.If that was the case, then why didn't he tell me to loose more weight before he can operate on me.He refuses to acknowledge that my tibial nerve has been damage and also mention the lady from Uta.

It was a terrible mistake to go to Turkey and I highly regret it.
I am very upset indeed!
Kind Regards,
Ali

"Posted"? This is confusing because the internet is international and I suppose he is bound by the laws of the jurisdiction in Turkey where he holds his Medical License - but I wonder if you could have grounds for legal action over this.
It seems that PN and the associated medication and lack of excercise cause many of us to become obese - that was certainly the case for me and I have to work on that. I see some other PN patients seem to lose weight / waste away with the stress of pain; but a weight change seems fairly typical. If he works on PN patients he is going to encounter obesity frequently, so if that is a contraindication he had better make that clear at the outset. Ali his behavior toward you has been highly unethical