Surgery November 2009

[jen9952]

Hi all, I had surgery with Dr. Conway in November 2009 on the left side ....I had a long recovery and about May 2010 I was feeling great no pain , no burning , it was great , I was still careful not to sit for long periods of time , limited bending all the things that you are suppose to avoid, and then mid January of this year I had really bad lower back pain, and then a few days later I had hip pain on my left side . so I went to my doc, who sent me to PT she told me it was piriformis syndrome and possibly SIJ disorder so she gave me some stretches to do at home which seem harmless, so I thought! anyhow the back and hip pain got worst and I also developed tailbone pain so I was sent to a pain center they injected my tailbone, and two weeks later they injected my SIJ's and soon after that all my pudendal symptoms returned burning labia burning vagina, back to the baggie pants ;( ...went to my gyno he did an exam and said that I had levator ani syndrome, which I do not believe I think he just told me that because when he was examing me I was saying please don't say its PN ......but I know that pain . so now I am back to square one ..I have an appointment with Dr Conway in June....but I know that he will want to do surgery again...
Has anyone developed these problems after surgery????

also I have been told that my pelvis is twisted, could that be causes my pain??? do you think that a chiropractor could help? I am in more pain now then I have ever been,and I can not take pain meds due to an eye condition, my eyes do not produce any oils, meds dry them out even more ,so ice is my best friend for now.

any advice would be greatly appreciated

Thanks
Jen

[Lernica]

Hi Jen,

Thanks for posting, and welcome to HOPE! I'm sorry about the hard time you've been having. I haven't had PN surgery so I can't answer your questions but many people on this forum have, so hopefully you will hear from someone. Please keep in touch and do not lose hope! We will always be here to answer your questions to the best of our ability and experience.

Warm regards,

Lernica

[jen9952]

Hi Lernica,

Thanks for your response and kind words, I am hoping that my visit with Dr.Conway in June provides with some answers, because the pain is driving me nuts , and everyone around me.


Thank you

[Karyn]

Hi Jen,
I'm so, so sorry your PN symptoms have returned. I'm also a Dr. Conway patient and am recovering from bilateral TG surgery. Because of your time frame, I'm thinking you had the TIR approach? Did you have one or both sides done? It certainly seems you have other pathologies going on. Who did you see for PT and how long after surgery did you go? Which of your doctors told you your pelvis was twisted? If that's the case, a twisted pelvis would definitely cause you all kinds of pain. My heart aches for you with the disappointment you must feel at feeling so much better and then suddenly not. What do you think caused you the most harm? The PT stretches or the injections?
Hopefully, we can all figure this out!
Warmest of regards,
Karyn

[jen9952]

Hi Karyn,
I did have the TIR approach only on the left side, I did PT right here in Maine from someone trained with PN and pelvic floor issues, I did not have a twisted pelvis before the surgery so I think the surgery weakened the pelvis floor , as far as knowing what caused my symptoms to return I have no idea, was doing great one day and then had severe back pain , then everything just went wrong after that.

So how did your surgery go? did he have cut a lot of the ligaments to get to the nerve?

Thanks Karyn for you reply , I hope you a speedy recovery and I life free of PN pain

Jen

[Karyn]

Hi Jen,
Gee - I really don't know what to say about your pelvis, but I CAN offer you a warm, gentle hug: ((HUGS))!!!!!! It doesn't sound like the PT you were going to was able to stabilize your pelvis. Did they do manual manipulations to your SIJ and pirifomis? I'm horrified by your injection experience ! Where did you have them done? Did Dr. Quesada do them? Is the GYN you're currently seeing PNE knowledgeable?
Warm regards,
Karyn

[Lernica]

Hi Jen and Karyn,

I notice we are all on line together. Hope you are both having a good day. I'm having a bad one (bad week actually) -- I'll post about it in the Case Updates section.

Love,

Lernica

[AliPasha1]

Hi Jen9952,
This is a great concern because now it is coming in light that severing or cutting the Sacrospinous ligament is also causing SIJD,Piriformis muscle syndrome etc in some patients.This is quite alarming and you aren't the first one who has developed SIJD or Piriformis muscle syndrome after their Sacrospinous ligament was severed.You can see from Dr. Bautrant's publication that 11% of his patients did develop Piriformis muscle syndrome after TIR approach,but he says no SIJD because the Sacrotuberous ligament is preserved.That doesn't seem to be the case.

I believe Spirit42 has the same problem and her Sacrotubeorus ligament was repaired by Cadavers by Dr. Hibner,but she still developed SIJD or Piriformis muscle syndrome because her Sacrospinous ligament was severed and her PN transposed at the ischial spine.The piriformis muscle syndrome can be well attributed either to the transposing of the Pudendal Nerve at the ischial spine and the SIJD due to the severing of the Sacrospinous ligament.

I believe that the Sacrospinous ligament ligament needs to be repaired or sewed back just like the Sacrotuberous ligament as being done by Dr. Hibner,Dr. Antalok/Dr. Conway.
You can talk to Dr. Hibner for using a cadaver for your Sacrospinous ligament if he agrees to it or talk to an orthopedic surgeon if that can be done.
It would be a great idea to have a 3 Tesla done with Dr. Potter at HSS in NYC and see if your nerve became re-entrapped in scar tissue again or the rotated hip is the source of the pain.I belive that Carlank from Texas/Arkansas had her redo surgery from Dr. Hibner and her hip was found rotated and when her ST ligament was re-constructed and the hip rotation rectified ,she was Pain fee at the age of 69 and is living a happy life now.She was first operated by Professor Robert of Nantes,France bt means of the traditional TG method with no success.The 3 Tesla MRI by Dr. Potter would be the first step to take in the right direction.

I would also like to elaborate again the PNE surgery isn't only confined to decompressing the nerve but also maintaing Pelvic stabilty by not severing the ligaments because nobody wants trade one pain for another.It is a balancing act between decompressing the nerve and maintaing Pelvic stability.

Kind Regards,
Ali

[jen9952]

Hi Jen,
Gee - I really don't know what to say about your pelvis, but I CAN offer you a warm, gentle hug: ((HUGS))!!!!!! It doesn't sound like the PT you were going to was able to stabilize your pelvis. Did they do manual manipulations to your SIJ and pirifomis? I'm horrified by your injection experience ! Where did you have them done? Did Dr. Quesada do them? Is the GYN you're currently seeing PNE knowledgeable?
Warm regards,
Karyn

Thanks Karyn, I did have some very mild manipulations done for my SIJD and my twisted hip, but neither helped !! my injection was done here in Maine , soon after that is when all my burning of my vulvar and all the other fun parts came back...at first I thought it was just a flare ...but I have been doing nothing to irritate it and it just seems to get worst....the worst part is I can not ever find a comfortable position due to the hip pain .... My GYN is somewhat knowledgeable with PNE , after all I live in Maine so there is not much help here.

Thanks again

[nyt]

Jen, I am so sorry to hear after doing so well that you have relapsed. I had a twisted pelvis that it took me finding a really good chiropractor and almost 1 year of treatments twice weekly to get it back into alignment. I can tell you it made a difference in my piriformis syndrome once the pelvis was in alignment. I could tell once the pelvis started get aligned that I would notice small but noticeable relief that gradually got better. My pelvis is tilted a little to much anteriorly and I have known this for years. We are currently working on that. The chiro is hoping that after the pudendal surgery and we can get my muscles to stop spasming we can finally get my pelvis to hold in the correct position.

As far as PT, I have not had good luck with the several I have seen and they all have made me worse. I said to the husband today that Dr. Hibner likes you to do pelvic floor PT starting 8 weeks after the surgery. He is very reluctant to have me do this for fear they will damage the good that has been done because of the lack of knowledge and not listening to me. I have my wound vac removed today and am going to talk with Lisa and/or Dr. Hibner regarding our concerns of pelvic floor PT. I will most likely see what I can do myself or what my husband can be taught.

You are in my thoughts and prayers as you figure out what has happened and get this back under control.