Young male with terrible sexual/urinary issues. PNE?

[Allan T]

Bumping my thread. Have some updates.

I saw Dr. Conway a few weeks ago and he diagnosed me with right-sided PN and also a right-sided sacral lipoma that could be irritating my medial cluneal nerve. At first he recommended I go through with PT and nerve blocks, but I voiced that I had already tried both of these with no success, so now he is offering the decompression surgery as well as removal of the lipoma. The lipoma removal is a simple 20 minute procedure, and I have the option of doing this separately to see if my symptoms improve. However, it's really inconvenient for me if the lipoma removal changes nothing, since I'd have to wait a few months then travel back out there (I'm in Kentucky) for a second surgery. It's a lot more efficient to do them both at the same time, but looking around online it looks like there are too many people who are worse off after the surgery.

Is there anyone here who has had success with the procedure? Unilateral decompression.

[Violet M]

I don't recall ever hearing of someone who had success with unilateral surgery but theoretically it seems possible. I've known people who had unilateral surgery and then went back to have the other side done. Did Dr. Conway say anything about whether he has seen successful unilateral surgeries before and did he say why he thinks it is unilateral?

Violet

[Allan T]

Violet,

Thanks for the reply. He did say he's had successful unilateral surgeries. It was something like 40% improved greatly, 40% improved some, and 20% had no change. Not too sure on those stats though. He thinks it's unilateral because he did the rectal exam and it hurt when he pressed on the right side but not the left. I believe him, since most of my symptoms are all on the right side.

As an update, I did get the lipomas removed this morning. It was a very simple procedure and I have no pain. However my pre-op symptoms all seem to still be present. I will give it some more time though. Have you or anyone else here ever heard of PNE symptoms being caused by something like this, in the sacral and spine area? Rather than the typical ligaments where the pudendal nerve gets trapped.

[Violet M]

Hi Allan,

Yes, spinal radiculopathies can cause symptoms similar to PN. Something pressing on the sacral nerve roots can cause similar symptoms to PN, particularly if it is at S2,3, or 4 which are the nerve roots the PN typically comes off from.

According to the Nantes criteria, unilateral symptoms is one of the criteria that points toward a possible nerve entrapment. I forgot where you said the lipomas were located. Typically they are more toward the surface of the skin aren't they? I'm trying to think how that could affect a nerve deep in the spine. Did your doctor have a theory on that? Anyway, best wishes with your healing.

Violet

[Allan T]

It looks like I'm going to move forward with the surgery. I found a couple people online who have had success with it, so I have a little more confidence in it now.

[Violet M]

Wishing you the best with the surgery, Allan. Recovery can take time so don't expect immediate results. Hopefully Dr. Conway has told you what to expect.

Take care,

Violet

[Allan T]

Hello all,

Posting an update. I am 4 days post-op from the decompression surgery. All went well, and Dr. Conway found that I was entrapped by the sacrospinous and sacrotuberous ligament fusing together. Initial nerve testing of the pudendal nerve required 5 milliamps of current to obtain a signal, and only 0.5 milliamps after decompression. He said the nerve was flattened as well as the pudendal artery. The nerve was also perforating a portion of the sacrospinous ligament. Everything was freed up during the procedure.

I still feel a lot of numbness in my genitals but not much surgical pain. I have not been able to get sexually aroused yet so I really can't comment on the results just yet.

[Violet M]

Hi Allan,

Thanks for the update. I'm sure Dr. Conway told you that the recovery from this type of surgery takes time so don't get too discouraged if you don't see immediate improvements. It sounds like you had a pretty significant entrapment so I think you can be hopeful that now that the nerve is freed up you will be able to heal.

Wishing you all the best with your recovery!

Violet

[April]

Thanks for the update, Allen. It's great to hear that he was able to decompress the nerve. And it sounds like surgery was definitely the right treatment for you. I'm glad to hear the pain is not that bad right now. Keep us posted.

April

[Allan T]

It hasn't even been a week and it already feels like it's getting better. My whole right side where most of my symptoms were present has this weird tingly numb feeling now. Still having a lot of urinary dysfunction but I feel like that will fade away with time. Sexual sensation is different in a weird way that is hard to describe, but I can only think that this is positive. Only time will tell!