Drawing of my Pain

[calluna]

This has been an interesting thread to read. I have no sacral or buttock pain in general myself, just perineal pain and also pain from one of the buttock incisions from the mesh surgery. (Five incisions in all, only this one still hurts.)

KC17 - you asked how long do nerves take to heal - I've been quoted 1 to 2 years, and also 6 months to 18 months. I think the real answer is 'it depends'.

One factor is the person's age and state of general health. I've been told that my age - 54 - counts against me, but on the other hand I am basically fit and well apart from PN. Another factor is what actually happened to the nerve. I think healing from surgery intended to help the nerve is rather a different thing that healing from some unidentified trauma - at more than 19 months after my mesh surgery, I have pretty much stopped hoping for the nerve to heal from whatever happened to it...

I am wondering about the theory that says, if there are pain free days then the nerve can't be entrapped. Because aren't most of us pain-free when we wake in the morning? If anyone can have a painfree night, it should surely be possible for anyone to also have a painfree day? If having the nerve entrapped meant that painfree days could not happen, then surely it should also mean that painfree nights could not happen. And we don't see this, usually.

It seems more likely to me that this depends on the exact circumstances of individual cases, and that there may not be any general rules.

[Faith]

I went to a physiatrist and had prolotherapy to the si ligaments, and ST ligaments as well as the hip tendons and gluteas maximus and minimus as well as the IT bands. I am waiting to see if it works, however, it flared up the bladder pain tremendously, and caused an "IC flare" the likes of which i have never had before.

Gregg

Hi Gregg,

Thanks for sharing your experience. I am very interested in prolotherapy. Please keep us updated on the results. Have your "IC" symptoms after the flare calmed down now? I may start a thread on prolotherapy as I would like more info about this. Also the PRP injection? Who does something like this? I did not know you could have a cortisone shot in your sacrum. Where exactly would they do that?

[Violet M]

Several doctors found I was hypomobile on the left. After a couple months and a few trips to the chiropractor they said everything looked normal. Unfortunately I think maybe my it is on the opposite end of the spectrum now and is in fact hypermobile [its always popping and shifting around down there]

If things are shifting around down there I wonder if that might account for why your pain comes and goes -- maybe it depends on your current alignment??? I don't know -- just throwing out a theory.

I agree with calluna's answer on how long it takes the nerve to heal. I knew one person who had a tumor removed from their leg and it took 12 years for them to get the feeling back in that area.

Gregg, I've heard several people who said they were helped by prolotherapy before PNE surgery -- not cured but helped. I think they had to keep going back for more though and the problem with that is some people develop scar tissue from repeat injections.

[TinyDancer]

Robyn,

Yes, my chiropractor has the DRX5000. Please, do not use that. It helped my back but made my PN problems SOOO much worse. I have basically been flat since I went through the treatment the second time. The machine pulls the plevis toward the legs, much like traction and that is the worst thing you can do to the PN nerve. It puts pressure on it.

Sorry ,
Kate

[helenlegs 11]

One physio I saw explained that the nerve slides along inside the protective sheaths http://www.netterimages.com/image/8167.htm
I would not imagine that there is much allowance for movement but this may mean that often the outer protective part of the nerve is tethered or trapped but there is still a degree of movement within of the actual nerve itself.
This could explain the delayed pain experienced as the whole part of the nerve that is in the trapped area gradually gets 'mashed'. The added tension in the trapped area will add to this process as will a build up of muscle tension due to building irritation and pain.
I know that repeated bending and lifting increase my pain which will be a tension thing but if you look at the image the nerves are spiraled to counter act this problem so there is a little bit of give here too . . . . until too much bending etc and the nerve reacts and the pain builds (and builds).
I think it was Amanda (sorry if I am wrong ) who said pacing onself with frequent rests was important as this gives the nerve(s) time to calm down. This works for me, although I often don't do it (pig headed ) but this fits in with this whole premis too. It's not like 'normal' injuries where movement to a certain point will illicit a painful responce, like touching toes or raising arms.
Not sure if any of this is correct but it makes a bit of sense to me, thats my take on some of it anyway. Now I just need someone to Take It Away!

Also saw this http://pelvicrehab.com/download/WEISSPNE.pdf
take care all
Helen

[Mulan]

I am wondering if decompression surgery help calm down the buttock pain. Does anyone experience the pain in black dot area ? any thought ?

[scaredgal]

Mulan, that is exactly where my pain is. It will be interesting to see if our MRI's are similar.

[Lernica]

Scaredgal,

Glad to hear from you again! How are you?

[Violet M]

Mulan, yes, that's exactly where my pain was (only it was internal) and it eventually spread to many more areas. Bautrant said my perineal nerve was affected but also pressing on the nerve at the ischial spine and alcock's was very painful.

[wendy7]

Hi Krista,

Great diagram. It is interesting to hear about the light scratch versus the actual holding down or pushing down in that area. The only thing that I can think of is that you may have some nerves in your skin that are triggering off other nerves far more within the body. But, I do understand what you mean by touching lightly versus pressing. I do think however that if you are touching the skin lightly, that it may be the nerves in the skin area that might be triggering off other pains.

Take care,
Wendy