Health Organization for Pudendal Education

Just wanted to let everyone know what a wonderful surgeon Prof/Dr. Aszmann is, as well as an extremely nice man. My surgery was the 19th of Sept. I was in Vienna until the 26th. It was a hard trip home as I was unable to recline on any flight, so I am very sore and my incision is still very tender, but I just got back from grocery shopping, so I am getting around ok. In fact, I was able to do some site seeing while in Vienna.

My surgery ended up being different from anticipated. My MRI from Dr. Potter showed entrapment at the dorsal nerve to the clitoris and the perineal branch, but once I talked to Dr. Aszmann and he examined me, he thought that was not what was causing my pain. I had the ultrasound by Dr. Bodner and it was clear that I had entrapment at the sacrotuberous/ sacrospinous ligaments. I also had a bad case of tendinitis at the ischial. He did the transgluteal approach and put a notch in the ligament to allow the nerve to have room to move. He said the nerve was in a very tight spot, but showed good nerve function after it was freed. He said I would have a happy nerve.

I would love to get advice from those who have had this surgery on recovery time, pain levels, when you were able to sit comfortably again, etc.

Violet, I know you had this surgery and I would love your advice. I am cautiously optimistic, but I want to be wise in my recovery.

Thanks for your help.

Barb

Barb,
I just wanted to wish you more pain free days ahead! It's wonderful you had a good experience with Prof. Aszmann, wish we had more doctors like him here. I just cant imagine flying back home from Europe after your surgery, wow.
I would just be freaking out, but at least by that time the surgery is over.
Did he recommend what to do about the tendinitis? I feel that is very common in PN patients.

If you are doing shopping already, that's great. Take good care of yourself, and thank you for sharing.

Debbie

Hi Barb,

That must have been a bit of a shock to end up having a different surgery than what you expected but it sounds like the docs had good reason to go that route. I hope your recovery goes smoothly.

I guess the #1 piece of advice I could give is to be patient and take it easy because it takes time to heal and it can be a bit of a roller coaster. I took narcotics for 9 months post-op and I didn't sit much the first 18 months because I couldn't really count on a good day until then but...hopefully it will go more smoothly for you. I also used a lot of ice.

I didn't do PT until almost a year post-op. I really didn't do much of anything that might disturb the nerve. Maybe that was the wrong strategy but pain levels were so high I just felt like I needed to let the nerve heal without complicating things. When I went places I did a lot of lying down and didn't allow myself to feel embarrassed about it.

Some docs recommend gliding exercises to keep scar tissue from forming. I didn't do them because I didn't know about them at the time but you might want to consider doing them. They are very simple. Posted at this link: http://www.pudendalhope.info/node/46#GlidingExercises
I also avoided things that caused flare-ups. That can be difficult because sometimes there is a delay in when you feel the pain so I added new activities slowly and gently.

I wish you all the best in your recovery and will be interested to hear how things go for you.

Violet

Hi Violet,

Yes, it was a bit of a shock that I ended up having the transgluteal approach when I thought I was having the anterior approach. He did see the scar tissue around the nerve on my Potter MRI and he toyed with doing an anterior approach and the posterior approach, but when he examined me, he didn't find that I was particularly sensitive at the dorsal nerve or the perineal area, so he opted for just the posterior approach. I also had just had another surgery 3 weeks before I went to Vienna to remove more mesh fragments that were eroding into my vagina, so my body has been through a lot. I have always had sacral pain and pain in the sacrotuberous ligament and the ischial tuberosity, but I just thought it was because of the entrapment at the other locations. He really listened to me when I explained my pain.

I am already seeing what a roller coaster this is going to be. I felt so bad yesterday with a lot of pain and discomfort. I have been having tingling down my other leg which really scared me. I am still very numb on my surgical side and have a bit of swelling behind the knee. I have also been sleeping a lot. However, today I am feeling better. The pain level is down and the radiating tingling down my other leg is better. I have been trying to be so careful about bending, squatting, etc. The only instructions he gave me was no exercise, stretching, bending, squatting or excessive sitting for at least 6 weeks. I am wondering if my instructions are not as strict as Dr. Conway's and others because he didn't cut the ligament? He just notched it to give the nerve room to glide.

Thank you Violet for your advice. I looked at the gliding exercise. It looks pretty simple. I will wait for a few more weeks before I try it. If you think of other things, please let me know.

Patience, patience, patience.....that is my new mantra. Also....never give up! I never thought I would fly to Europe to get help, but I am glad I did.

Barb

Hello Barb,

I know nothing about such operations, only what I read from others but I wish you good recovery.

Helen

Barb, for a long time, sleep was my only escape from pain so I think there is nothing wrong with sleeping if you can. I think it's a great way to give your brain a rest from the exhaustion chronic pain causes.

Violet

Violet,

I am at my three week mark and I seem to continue to struggle with energy level. I also wanted to ask if you remember whether you had nerve cross talk in the beginning of your recovery. My surgical side is not as numb, which means I hurt more and I am also feeling sciatic like symptoms on the other side. I am sure the nerves don't like to be handled, so I guess this is all a part of healing. I am actually hurting more now than right after the surgery. I know this is very early and I am staying positive as I know in takes a LONG TIME for healing. Now I know why you said you stayed on your pain meds for 9 months. It give me such reassurance to know you are doing good now, but it didn't happen overnight....

Also, how did you manage not bending or squatting? I am becoming quite adapt at picking things up with my toes, but it gets hard.

Just venting. I will probably feel better tomorrow

Barb

Barb does it mean that prof. Aszmann is now doing also TG approach?
if yes, this is good news for European patients
He was known to do only anterior approach focused on dorsal nerve entrapment.

Yes, and he did a great job. The scar is barely noticeable. It just looks like a scratch and it has only been three weeks.

If you read my other posts, I went for the anterior approach, but once I was there, he really didn't think the dorsal nerve was the main pain generator, based on where my pain was. Once I had the ultrasound by Dr. Bodner, they saw how enlarged the sacrotuberous ligament was and how the nerve was swollen and trapped between the two ligaments. I also had a really bad case of tendinitis at the ischial and hamstring. I think here in the states it is called high hamstring tenopathy, so they injected that to calm it down. That was one of the reasons it was so painful to sit.

I can not say enough good things about Prof. Aszmann, but it looks like you have met him. I am healing, and I know it will take awhile, but the only nerve pain I am having right now is some sciatic like symptoms on the other side. I think it could be because of the long flight home. I could not recline and I think the cushion I was using could have caused the irritation to the nerve.

I hope things get better for you. This is such a hard condition to deal with.

Take care.
Barb

I wanted to add something to my last post. I am still very tender and sore at the incision site and some days are better than others as far as pain levels, so I didn't want people reading the last post think I am ready to run a marathon. The good news is the pain is better than before the surgery, and hopefully, that will continue.

I hope this will help the people out there who are struggling with this horrible condition. Stay positive.......there are doctors who care and want to help.