Post surgery update

[Violet M]

Barb, this is just my own theory -- I don't know of any literature to confirm it. I do believe that pelvic instability and misalignment can lead to entrapment of the nerve between the ST and SS ligaments. I think that is what was happening in my case and releasing the nerve allowed it to heal. I don't think I have ever read an MRI report that said anything about a tight space between the ST and SS ligaments or compression of the nerve by ligaments. The closest report I remember seeing (an MRN) that even suggests compression of the nerve between the ST and SS ligaments said something about enlarged blood vessels near the ligaments suggesting a back-up of blood in those vessels due to nerve compression. With PNE being most common at the ST/SS ligamental grip (according to the surgeons) it would seem that MRI's would be showing entrapments there doesn't it?

I also don't know of any literature that confirms that scar tissue on an MRI can be shown to be the cause of pudendal neuralgia.

So, I guess the point of what I'm saying is that to my knowledge, the MRI hasn't been proven to accurately diagnose pudendal nerve entrapment. Probably haven't answered your question definitively, Barb, but just pointing out some of my own observations and I hope this helps to ease your mind that Dr. Aszmann probably peformed the surgery that you actually needed.

Violet

[Barb]

Yes, thanks Violet, it does help to have another person's perspective on this huge puzzle called PN and PNE. I do feel comfortable that Prof. Aszmann did the right surgery on me. It was so obvious in the ultrasound that my right sacrotuberous was so much thicker than my left and was causing compression on the nerve. He said it was in a very tight spot. I am just hopeful that I don't have other entrapments in the area Dr. Potter showed.

I know the nerve is feeling better, but I still have the "ischial issue". I just had an MRI that showed no tendonitis at the attachment to the ischial tuberosity like Prof. Aszmann thought. ( I was thinking about getting Platelet Rich Plasma injection to tendon, but not now.) However, In rereading Dr. Potter's report, she showed dense scarring of the superficial transverse perineal muscle and that also attaches to the ischial tuberosity, so the PT worked on releasing that tissue internally and WOW,it felt like a bruise rubbing against the ischial. She said the muscle was not firing and was very thick.

Amazingly, it did not cause any problem with the nerve. I did not get a flare, but she also did not get up to the ischial spine. The muscle goes between the ischial tuberosities, so it is lower. I don't know whether to leave it alone for now. I sure don't want to disturb the nerve while it heals, but I would also like to sit more comfortably. I am not having any perineum problem......just the sit bone and it remains very sore.

Oh well, I am very thankful for the healing I am having. I am doing more and not having as many flares.....so all in all, I am very grateful.

If any one knows more about the superficial transverse perineal muscle and clues to helping with scarring, I would love to hear.

Thanks again Violet.
Barb

[blightcp]

....

Honestly, I didn't follow the post-op guidelines I got from Dr. Conway. Instead, I followed his verbal instructions: "If it hurts, don't do it!"

....

I know it was a while ago...
Karyn, I just heard Dr. Conway in my head when you posted that. It made me laugh.

[Karyn]

Karyn, I just heard Dr. Conway in my head when you posted that. It made me laugh.

!
Well, I have to admit ... it was difficult, but the best advice I ever got!

[sharona]

Hi
great news from you Barb!
Could you please explain what is TG ?

I'm considering going to consult with one of the doctors from this website. I'll have to cross continents for this so it won't be easy. But my body aches like hell. Lying on my back is hell... when my sacrum touches the matress it starts to burn and then next to come are my legs down to my shins and my pireneum buttock and pelvic.
Of course with sitting it's the same

I'm so confused. No PT around me that knows the subject! The best in the contry here only know/ do internal PT but no one talks about right/wrong positions or exercise - but obviously there are. My whole pelvis is unstable. I have beeb doing this one leg standing exercise. - isn't it good? Why?
Could you pleasssssse elaborate as much as you can?
On the strechings and on everything. I can't find someone to consult with here and pain is getting worse everyday. I can't stand it. Realy.
I'm on Lyrica unfortunatlly so I don't necessarily feel what is wrong for me. But I do have to exercise as my hole body is in pain and my pelvic is unstable.
Any info can help.
Thank you so much. This is the worst time of my life and I have to find a way to make things better as I have a 10 month baby at home.

[Violet M]

Sharona, when my pelvis was unstable with sacroiliac joint dysfunction my PT told me not to stand on one leg at a time. She said that even when you put on pants you should sit down so that you aren't standing on one leg. For me it was because my ligaments had chronic strain due to exercise and more exercise just made it worse. How do you know your pelvis is unstable? Can you find a manual therapist who deals with body mechanics?

Violet

[solarmom]

Hi Violet,
Wow, that is interesting about not standing on one leg if you have SIJD.
In my case, I know I have had SIJD for the last few years. In fact, when I would need to bend over, I would actually lift the leg on that side into the air and just bend over on one leg. I could never balance for long on that leg. My first PT found my hips were uneven and after she pointed it out, I could see this in the mirror. I just looked for the dip of my waistline and noticed that if I drew a line from the top of one hip to the other, it sloped. Gak.
She gave me exercises that helped counterrotate the pelvis to align it. I found that once I started doing that it helped with burning in my hips and that seems to be holding. However, I don't know if the damage is done and the nerve is trapped between the ligaments.

[sharona]

Hi
I feel my pelvic is unstable and I think I know it's unstable as few different PT told me different things about which side is lower - right or left.
what helps with it? Can it hurt the nurves or press them?
Have you tried a Chiropractor? Can he put the pelvis in its right position?
You say that your SIJD is from wrong exersice?
My PT doesn't say anything about right ir wrong position. can you find a way to send some things that helped you?

Oh god I feel so bad I can't continue like this. When lying on back , my Sacrum starts to hurt/ burn and then burning goes down to my legs as well. Does it sound familiar to you?

Many thanks for your answers....

[Violet M]

Sharona, the way I dealt with it may not be right for everyone. I had pelvic misalignment with PNE pain much worse on one side so I chose to have pudendal nerve release surgery to first try to get the pain under control but it was not an easy surgery to go through and I think it would be smart to try some manual therapy to try to get the pelvis into alignment before trying surgery. Before surgery I tried a chiropractor but she "fired" me and gave up because my pelvis would not stay in alignment for more than 5 minutes. I tried an SI joint belt and taping but those didn't really help and the SI belt aggravated the PN pain. You might want to read some of Hermajesty's posts about the Hesch method of manual therapy for getting the pelvis into alignment.

I had some sacral discomfort and burning in the inner thighs -- not sure if it's the same as what you have. Prolotherapy into the SI joint helped although it actually increases your pain temporarily after the injection.

I'm actually doing great now working with light weights and wearing a weighted vest 2 hours a day which increases core strength. It is also excellent if you have osteoporosis by the way. But there is no way I could have done these if I still had severe PNE pain like I did.

Violet

[solarmom]

Hi Violet
I have being going to pt and haven't seen any huge improvement. I think I will go in for the nerve blocks but I don't know where they would try them for me. I know you said your problem came from weightlifting.
I haven't done that but have lifted too much over the years with resultant regular pain in my left sacroiliac (my pain is left sided).
Before the pudendal pain this fall I was burning in my sacrum and unable to lay on my back. All of the other pain came later. The osteo said I pulled ligaments and the top of my butt crack was the most sensitive part.

For those with entrapment between the ligaments did they have this sacral burning? I have just wondered if the origins of my nerve problems are much higher...