Health Organization for Pudendal Education

I got an MRI done by Potter and i am considering doing an MRN to see if results differ/agree with her results. Any thoughts on this? would this be beneficial? If money was not an issue would it be useful to have an MRN done in addition to the MRI? Or is this something that people tend to find is counterproductive?

Are there any other tests that would help me understand a diagnosis in addition to the two mentioned above?

Thank you,
Dominik

Hi Dominik,
I had nerve blocks that helped with PNE diagnosis. There are some other tests people had as listed in the FAQs off the home page such as PNMLT? unfortunately the MRIs and MRNs do not always show PNE. I had an MRN at Johns Hopkins in Baltimore which was done"to rule out other things"and did not show PNE but that was confirmed when I had TG nerve decompression surgery. My nerve was being compressed by the two main ligaments and based on my history, nerve blocks and lack of quality life I was a candidate for surgery.
Janet

janetm2 wrote:Hi Dominik,
I had nerve blocks that helped with PNE diagnosis. There are some other tests people had as listed in the FAQs off the home page such as PNMLT? unfortunately the MRIs and MRNs do not always show PNE. I had an MRN at Johns Hopkins in Baltimore which was done"to rule out other things"and did not show PNE but that was confirmed when I had TG nerve decompression surgery. My nerve was being compressed by the two main ligaments and based on my history, nerve blocks and lack of quality life I was a candidate for surgery.
Janet

Hi Janet,

Thank you for the prompt reply. I am starting to see that maybe another MRI or MRN wouldn't be that useful. I was contemplating getting an MRN done and having it reviewd by Dr.Filler. As he is a surgeon that specializes in TG surgery maybe he would know more about the SS ligaments and let me know if that is the culprit of my symptoms. You had noted that your tests (MRI etc) did not confirm PNE but when you did do the TG surgery they did in fact find out your nerve was being compressed by those ligaments? I guess the only way to know forsure is to do the surgery?

Sadly that appears to be the confirmation of the diagnosis and why everyone tries to do conservative treatments first and/ or wait until they feel the have enough pointing to surgery and quality of life is poor. I honestly did not get to forum until after surgery - somewhat blindly going the old route of trusting the doctors and not realizing how unknown thiis was or possibly risky until they said success was considered any improvement ( not necessarily major improvement). My choice was surgery was basedon PT saying the ligaments were so tight they were most likely compressing the nerve although they are not doctors and cannot confirm diagnosis. I then went to Dr Marvel and had nerve blocks - his unguided showed some relief but the ones done guided by another Dr he sent me to gave full relief for a few hours. Then with my history he said I was a candidate for surgry and given that I already had feet issues and sit to alleviate that pain but was declining in ability to sit I felt I needed to get surgery before losing my job and ending up 24/7 pain level 10. To be honest I am not sure how to quantify my improvement but I am doing better than I was so I am glad for the surgery. I am working to finish my career in 2 years but am taking it cautiously and work 6-7.5 hours per day using Family Medical Leave Act Leave WithOut Pay to cover nerve pain and foot pain. Hoping things wil, be easier when I retire. Knowledge, information and treatments are slowly growing for the condition but it is quite the journey to get a diagnosis and get some relief. I do hope it gets better for those in the future. This website has a great deal of info and myriad of knowledge from members not just on PN/PNE but all related or similar issues. Oh yes he confirmed my ,igaments were compressing the nerve in surgery. He was fairly confident and is why I was a candidate for surgery. I think the few PNE doctors are the ones to get with to help determine this using info from PT, history, nerve blocks and whichever other tests they feel best get the full picture. I am not sure if another MRI or MRN would provide more info, it may or may not. The nerve block was more useful to me and seeing a PNE doctor might be more useful (Dr Hibner and Dr Conway seem to rank highest in the U.S. some folks had mixed feelings with Dr Marvel. I think he did a good job surgically but when I was not better in a month he sent me to a pain group I did not like and eventually I got with a good Gynecologist that helped me through with PT, acupuncture, psychology and suppohrts me with paperwork, etc. I found a better pain group and have done water therapy to help strengthen the core and keep pelvic instability somewhat under control. I am still using meds as needed at night or now and again for a flare up daytime. I just got back from a vacation 1 hour flight to see family and I brought my custom wheelchair cushion so we could do more that hang out at the house. I am still working to adapt and do as much as possible. That and patience are keys to moving forward without overdoind and setbacks/flare-ups. I hope you get with a dr soon for diagnosis and treatments for some relief!
Janet
Janet

I agree with Janet my MRI scan came back completely normal yet through TG surgery it revealed both pudendal nerves were in a very sorry state. I think it is the case that it is only when the nerve can be visualized through surgery that the true picture emerges. Saying that prior to surgery I had a high quality ultra sound diagnostic test that revealed both my right and left arteries were sluggish and I was told this was a sign of PNE as the nerves were impinging on the arteries so you may want to request that test?
Good luck and keeping believing there is help out there
Happy Easter

Desperate,

I don't know, this thread might shed some light on the subject. http://www.pudendalhope.info/forum/view ... f=69&t=319

I've read lots of MRI and MRN reports and it seems Dr. Potter tends to report scar tissue and thickened ligaments whereas Dr. Filler tends to report increased intensity around the nerve or back-up of blood in the pudendal nerve vessels due to being compressed, that could indicated the nerve is also compressed. This is just my impression after moderating the PN forums for 10 years. So, I'm thinking the MRN might possibly show something different. You can have them done much closer to you than in California where Dr. Filler is. Regarding Dr. Filler's surgical technique, I have not heard of very many successful pudendal nerve release surgeries from people who have been to see him. My understanding is that he tries to target just the area that he feels is entrapped during surgery sparing ligaments if possible, rather than using a TG protocol that decompresses along the course of the nerve at the ischial spine and alcock's canal. So it sounds good, but hasn't panned out for some people in reality. Not that any approach is a 100% guarantee. But I think before even considering any type of surgery, it's good to rule out all other possibilities and try conservative therapies because once you have those ligaments cut and scar tissue forms, there's no going back.

Violet