Is MRN with Filler Worth it?

[HerMajesty]

Rhonda Kotarinos has a fantastic national rep and I know she is in Illinois but not sure how close to Chicago. If Dr. Potter is in network by all means go for it, but just be aware that while she gets "more" info for her patients there is not a concensus on whether it is all "more useful" information. She might be over-reading and finding artifact in some cases. That is an open question since as far as I know, she has never done a blind series of readings on a mixed sample of symptomatic and asymptomatic patients.

[chemjim]

Actually, HM, I saw my neurologist today and he was asking basically the same question: OK, so they ID a problem in the pudendal nerve, what now? He was saying that I already know I have a problem, so what use is the imaging? I would be pleased to have some validation, even though I don't really have a problem with people not believing me. Still it would be nice to be able to point to something and say that's why I needed the standing desk, that's why I can't help you move your piano, etc. However, I'm not sure that's really a good reason.

I also would like to see Dr. Potter's group do a blinded study.

[HerMajesty]

If you want validation which will eventually help you get insurance coverage for treatment, go for the PNMLT (Pudendal nerve motor latency test). The imaging is too new. While I was fighting for insurance coverage for my surgery, they basically called me a liar about having pudendal symptoms and in doing so said the MRN is an unproven / experimental imaging test. I got the PNMLT and turned it in to them as the only new evidence for my 2nd appeal, along with a nastygram, and they determined the surgery was medically necessary. So I guess the PNMLT is more respected as proof of PN, in the insurance industry at least. When I was looking for a PNMLT provider, i called Dr. Hibner's office and was told they don't offer the test because Dr. Hibner does not consider it a reliable diagnostic tool...but then I am pretty sure he feels the same about the imaging studies.

[Sydneysufferer]

Hi all,

I decided to post here as the Tarlov Cyst was mentioned and I wanted to ask a couple of things about it. First I'll start with my story:

Sitting for long periods after a case of bad shin splints left me pretty immobile as I waited for orthotics
Hard chair - at least a couple of full uni semesters ticked by where I spent long periods on this chair getting work done
Ignored numbness in buttocks, coccyx pain etc
Started to experience PGAD symptoms last month
Stopped sitting/sex - PGAD has abated but I know it's under the surface :-s
Physical therapist and PN specialist pressed pudendal area and left side was insanely painful and left me sore in the sacrum for a good few days afterwards
Had MRI today and obviously I don't know how to read it but worried the radiologist might not think to mention if there was even a small cyst.

My question is: would Tarlov Cysts elicit the pain I experienced when pudendal nerve was pressed during the vaginal examination?
Thanks guys. I am new here but reading up every day - thought I would introduce myself.

[helenlegs 11]

Hi Sydneysufferer, welcome
I can't answer your question as I have no good knowledge of tarlov cysts except to say they can cause problems. Her Majesty has posted some good info about them recently, especially to say don't ignore them. You have probably seen them? She is the TC expert and I'm sure she will post, if around.
Hope you get answers,
Take care,
Helen

[HerMajesty]

Here I am !
With my TC's, I definitely stood out from the pudendal entrapment crowd in that I did not have a pain response when the nerve was palpated. But, I am not sure if this is a general feauture of TC's because I am all-around weird when it comes to neuropathy. I have more numbness and neuropathic itch than pain, and have delayed reactions such as I can sit comfortably all day and then have a tremendous flare from it the next day. I am not sure that is true of PN with all TC's. The are a few TC message boards, which I do not use because they are Yahoo! groups and I find those difficult to navigate - but you could enquire on one of those if you are comfortable with the format. You can also look up the website of the Tarlov Cyst Disease Foundation and fill in the "contact us" section - you will almost certainly get a prompt personal phone call back from the Foundation President Reta Hiers, the woman is a tireless advocate and very knowledgeable so she might be able to answer your question from the experiences of the many patients she has come in contact with. I have only my own experience so can't say for sure, sorry.

[chemjim]

HerMajesty, I see that you did fine with self care for years. I'm doing reasonably well with self care plus some meds. I'm wondering if anything in particular started the worsening of your symptoms. The more I find out, the more I think that as long as I'm in my current shape I don't want to mess around with surgery. I'd love to be "fixed" so I could go out cycling again, but I don't think there's a good chance of that happening. I miss cycling so much it makes me crazy when the weather turns nice, but I feel I've got to turn the page.

Anyway, our stories are clearly different, but I'm interested in what happened to you.
Jim

[HerMajesty]

Chemjim, I had only interstitial cystitis for the years I did well with self care alone. I can date the onset of interstitial cystitis back to the time that I developed SIJD. If I had tarlov cysts the entire time then they were asymptomatic. While interstitial cystitis can be neuropathic in origin and mine was neuropathic (injury = muscle spasm = faulty nerve signals to the bladder), I had no other neuropathies. I started developing the neuropathies associated with Tarlov Cyst Disease after my second childbirth which was a precipitous birth (that's defined as intense contractions with total labor time less than 2 hours). Personally I have chatted online with several people who have both SIJD and tarlov cysts, and I think one may be causative of the other or a third factor may put someone at risk for both, but I've never met a practitioner in the field who agreed with me on that. They think some of us just get lucky twice I suppose. My experience with neuropathy has been that it progresses and new symptoms develop slowly but surely over time...and that as nerve compression causes nerve damage, it would be much nicer to treat early than to put it off until you get really bad. Maybe not everybody's PN is progressive though; I am just speaking for myself. I am sitting here now post-op, having to wait months to see how much of the nerve function I get back and how much of the damage is permanent. My suggestion to you is that if you want to try to manage with self care and meds alone, change your mind quick if you realize that your symptoms are becoming more intense on the pain scale over time, or if you develop new symptoms in any area.