A very scary MRI Result! Help!

[sailor_moon]

Can anyone please help me understand what treatment options are for the MRI diagnosis I have just gotten? I am so so scared right now it isn't funny. I got my MRI report emailed to me and the results say :

Right Pudental Nerve Entrapment above the ischial spine appears likely. Relatevely narrowed perineural canal by an accessory sacrotuberous band forming the falciform process and arsing above the ischial spine. There is significant subsequent narrowing of the perineural canal .

Acute angluation noted at the S4/s5 junction of the sacrum causing some narrowing of the sacral canal to a minimum of less than 2mm. Although this may be developmental ,it can also be post- traumatic . Encroachment on the adjacent sacral nerves cannot be entirely excluded.

It is scary enough that I have the MRI diagnosis that says I have basically got PNE, but all this technical jargon about my spine is really terrifying to me, I dont understand what they are saying the cause actually is because it is put so technically. I have no idea what this means in options of treatment... I don't see the specialist for another 2 months. I am freaking out.

Can anyone give me some form of advice as to whatany of this actually means is wrong and what treatment would be?

Any advice would be very very much appreciated because I am currently a mess.

[Violet M]

I think one important thing to keep in mind is that MRI's don't always correlate with actual symptoms and what the surgeons find when they go in for surgery. At least that is what some of the PNE surgeons are saying. I have a relative who is an orthpedic surgeon and he told me that they see MRI's that look awful but the patient has no symptoms and then they see patients in extreme pain whose MRI's look normal. So you can't put too much stock in the MRI.

Another question is, do your symptoms correlate with the MRI findings? I read back over your previous post and it says your entrapment appears to be on the right side but you said your deep nerve pain is on the left side. Also remember your pudendal nerve blocks were successful which makes me wonder if there is really much significance to the mention of the possible impingement on the sacral nerve roots. Sometimes radiologists "overread" images and the report sounds worse than it really is. This is what happened with a relative who has cancer and for 6 weeks we worried that it had metastasized to his lungs but it hadn't. We later found out that the radiologist had "overread" the CT scan. Your MRI mentions that the sacral anomaly could have been something that developed, I'm assuming with puberty as you grew, and if that's the case -- why didn't you have pain when you were a teenager? And why were the peripheral pudendal nerve blocks successful? You would think in order to be successful you would have needed sacral nerve root blocks instead of peripheral pudendal nerve blocks but I could be wrong. Just something I would question the physician about. You can ask, if it's the nerve roots that are the problem, why did peripheral nerve blocks help temporarily? Besides, the report is not definite about there being nerve root impingements and I certainly wouldn't go into an type of spinal surgery without something more definite than that.

You also have to factor in your history of heavy exercise including weightlifting that could have caused trauma/injury to the pelvic area. Did the PT you saw evaluate your sacroiliac joints, pelvic alignment, and ligaments? I think it's unfortunate that the PT said she couldn't help but maybe it would be possible to get a second opinion -- maybe from a manual therapist who can evaluate your entire pelvic area and alignment. Check with Peter Dornan on our list of Australian PT's to see if he can recommend someone in your area for a second opinion.

If you aren't able to get any help from PT's then the goal would be to achieve some type of effective pain management until you see Prof. Vancaillie. This may involve some trial and error with trying things like a TENS unit to relax the pelvic floor muscles, pain medications (http://www.pudendalhope.info/node/20), alternating heat and ice, or you can even try hot/cold sitz baths. Definitely don't do your exercise routines for now because that might contribute to your pain.

I think the internal pelvic exam may also offer some important clues as to what the actual diagnosis is. I'm sure Dr. Vancaillie will be an expert on doing the pelvic exam and determining whether there is pain along the course of the pudendal nerve itself or at the ischial spine which can be suggestive of nerve entrapment. If he concludes you have PNE, then surgery might be the answer. It has definitely given me back my life but it's a long slow recovery so if you can avoid it that would be nice. The good thing is that Prof. Vancaillie is very experienced with treating pelvic pain patients and he has an excellent reputation. He has helped a number of women on this forum.

I know it's really hard to wait for your appointment when you are in pain. Hopefully you can find some temporary pain relief while you are waiting for a diagnosis. Don't be afraid to take opioids if your doctor will prescribe them. I used them successfully for about a year. I did not take he time released forms -- I just took the 4-6 hour tablets and I just took them in the afternoon and evening so I would not develop a tolerance or addiction to them.

I think there is a very good chance you will get better. Please stay hopeful.

Violet

[sailor_moon]

Thanks for your reply Violet.

Yeah my symptoms do match the report. Looking from my point of view, I say left, but from everyone elses point of view it would be my right hand side if that makes sense. It would have been classed as my right hand side on the MRI.

I am booked in for a CT scan with contrast and a nerve block containing added hyaluronic acid [or however you spell it] which is meant to be great for helping the nerve heal. Its so expensive though...$2,500 + accommodation and travel...basically $3500!!!and I am not in a health fund [could never afford to pay to be in one, and at 25 when all this started I never thought that 3 1/2 years later this is where I would be!]. They want me to have a second one done but I will be saying No, I just physically cannot afford it, especially with it just being a mainly diagnostic procedure, its not fixing my problem....especially if he says surgery is the only way to fix my problem, I cant afford to waste another $3500 on a mere diagnostic procedure that has already been done once, and I have had 3 successful nerve blocks without CT prior to this. I currently have a family member trying to talk me out of it saying its a waste of money getting this done and that its just another incompetent doctor whos after my money, which is only making me feel more stressed and fearful. but I feel I have no other choice...I turn 30 next year and I am in a hurry, I feel time is running out for me to have a baby...I would have had one years ago if this hadnt happened. I have hormone problems too so its going to be hard to fall pregnant now, let anone in a few years when I'm older and there are other complications.

I have had no further help with the Physio....she said she rang Prof Vancaillles office n they refused to give her any futher info, but when I called they said they knew nothing about it and said they would have been more than willing to help her with any info she may need. So I am honestly wondering if she made it all up coz she put me in the "too hard" basket and didnt want to deal with me. Her mannerism wasn't very nice when I saw her.

You are very informative and I am very grateful. Have you ever heard of anyone with PNE getting fixed without surgery?

[Violet M]

Thanks for your reply Violet.

Yeah my symptoms do match the report. Looking from my point of view, I say left, but from everyone elses point of view it would be my right hand side if that makes sense. It would have been classed as my right hand side on the MRI.....

You are very informative and I am very grateful. Have you ever heard of anyone with PNE getting fixed without surgery?

I'm not sure I understand your explanation of the right vs. the left regarding the MRI report. In the USA a medical report would be written from the patient's point of view....so if it was what you considered your left side, the report would say your left side. I would definitely get clarification on this from your doctor. In the USA, the MRI report you typed above saying that you have right pudendal nerve entrapment would mean your right side from your point of view.

Your question about PNE getting fixed without surgery is a difficult one to answer because PNE is very difficult to diagnose and there are differing causes of PNE. I think if a ligament is pinching the nerve, it's difficult to resolve without cutting away that ligament, unless the ligament pinching the nerve is due to pelvic misalignment that can be corrected without surgery. Some people can get their alignment corrected successfully without surgery. I was not able to and that's why I needed surgery to get the ligament off the nerve. But there are plenty of people who have been diagnosed with "PNE" whose symptoms did not resolve successfully from having surgery. That's why you try all of the conservative therapies you can before even considering surgery. There are some people who have been diagnosed with PNE who have resolved their pain using the mindbody approach. Some of them had surgery first and some didn't. The mindbody approach didn't work for me but it does for some people.

What does this family member who is trying to get you not to go through with treatment think you should do? Do they have a better solution in mind? Unless they have something better in mind then sometimes you just have to ignore them and do what you feel is right for you. It's tough when you are so young and wanting to have a family. Makes me feel sad for you. But I really think you will get this resolved with the right treatments and you will be able to enjoy life again.

Violet