MRI and scarring

[wendy7]

Hi guys,

This is a very interesting topic. I think that the MRI's can be used as a diagnositic tool in helping to define where some of the probable causes of pain could be. I would imagine that there could be some people out there that do have scar tissue in the same areas that we do and maybe even with a possible entrapment issue as well, but may not be experiencing any pain at all.

There were several studies that I looked at on stretch PN injuries after childbirth. Some ladies had significant stretch injuries, but had absolutely no problems at all, while others with lesser stretch injuries did have problems.

So, if you have pain in the rectal area and they are finding scar tissue around the Alcock's canal, that may be the problem area that needs to be fixed. I guess I would say that an MRI can probably confirm what you are experiencing as far as pain is concerned. Another issue would be, if you have scarring around something like the dorsal nerve of the clitoris, but you do not have clitoral pain, would you really want to get that fixed?

I don't know, but there is alot to think about!

Take care,
Wendy

[scaredgal]

Agree - very interesting topic. I have varices and scar tissue in the areas corresponding to my pain/symptoms and according to my one correspondence with Dr. Potter, she said "entrapment". However, every pain doctor and neuro I've been too says there is no way she can actually tell if the nerve is "entrapped" and the scar tissue presents as "thickened" tissue - and my question is, is it really scar tissue??

I think this is so similar to what we have heard about spinal MRI's/C-scans in the past. You can have a patient who's MRI/C-Scan of their spine look horrible and they are totally symptomless. You can have another patient with nothing viewable on the scans and they are presenting with horrible pain. Is it the same with the MRI (as well as the PNMLT?) I have also had the PNMLT, which was abnormal on the right (but not on the left). I had asked the doctor if "normal, pain free" people ever have an abnormal PNMLT, which I was told "who would have this test if they didn't have PN pain?"

So, unfortunately, unlike back pain (which is so rampant and so many studies have been done), there are no double blind studies on either the MRI or the PNMLT for PN pain. How many pain free people if they had these tests would appear to be just as symptomatic as we are on the scans/electrodiagnostic testing?

[A's Mommy]

Good points, Wendy.

I had the 3T MRI with Dr. Potter in July '10. It showed bilateral PNE in the Alcock's canal, Left much greater than Right, however. I never had right sided symptoms until early September. The left was excruciating. I had Left sided TG surgery w/ Dr. Hibner 12 wks ago and I feel though it is slow, that I am improving. My new PT did her first internal exam of my muscles last week and determined that the left sided muscles were much looser than the right. This was the OPPOSITE from before the surgery. She says my right side has had to pick up all the slack of me protecting my left side for so long. But, now, I'm experiencing right sided pain in the Alcock's canal area. Sometimes, it's almost worst than the "healing" nerve pain I feel on the left. Like for example, last night, I had ice on the right but not the left. I am so very frustrated. Whereas a lot of people only have one sided entrapments and then can heal and move on with their lives and plans, I feel as though I'm in this constant waiting game. My PT said not to assess whether or not I'll need a right sided surgery until at least April or May. At the rate I'm going, my left side should be feeling a lot better by then. My husband and I would like to make vacation plans but feel as though we can't do ANYTHING because of this weirded out right side! Another thing that Loretta (Hibner's PT) told me is that just because there is scar tissue around a nerve does not mean you have to have surgery. It's all about clinical symptoms and pain. So, if I can get the muscles to relax and the nerve to calm down w/ PT, then maybe no surgery? What happens if I flare it up again somehow and end up needing a surgery in say, like 2 years...? Then, my nerve has been entrapped THAT MUCH LONGER. This PNE game is not fun. I wish Dr. Hibner would have just done both sides at once, but I understand his reasoning for one side at a time. It was excruciating for just that one side. I am still on the couch this morning with ice. Some days are better than others. I'm not yet 4 months out, so I don't want to post a "REPORT", so to speak. I just wish I could get over this and get on with my life. Sorry, venting here.

Love,
AM

[wendy7]

Hi guys,

The unilateral thing becoming a bilateral thing is very common. I don't know, but a really long time ago, I had posted a study that they had done on rats in Boston. They had cut the major nerve in the rats left leg, to see what would happen. Now morally, I think this is unethical, but the results were interesting. It showed that after 6 months, that the other major nerve on the right side had lost almost 50% of it's capacity to send signals out. The right nerve was not working as well as the left one. Their conclusions on this, is that the nerves are connected to the spinal cord and are basically an exact replica of the other side, so that when one is hurt, then the other becomes hurt as well.

Now, just my opinion, if you look at it in a different way, but if you have one hurt nerve that is getting better, because it was decompressed during surgery, then over the course of time, I would imagine that the other nerve on the other side would heal just as rapidly.

I had alot of right sided pain after my surgery with Dr. Hibner. I think I still have some right sided pain, but certainly not to the extent that it was before. So, I hope this helps some.

Take care,
Wendy