VERY INTERESTING - DR. FILLER'S OFFICE ON MRN VS. 3T

[HerMajesty]

kathyd,
I originally started this thread. I am somewhat doubtful that any of the current imaging (MRN or 3T) can objectively live up to the diagnostic claims made by certain practitioners who read them (Filler, Potter). I think their diagnostic value is real but limited. Depending on your underlying pathology, these tests might or might not be diagnostic or offer you a next step.
For me it was the key to my getting better. My MRN showed tarlov cysts (aka perineural cysts, aka meningeal cysts) in the sacrum. While Dr. Filler's office suggested I ignore them (he does not treat them), and instead focus on piriformis injections which he DOES do: I decided the cysts were important, did my own research on them, got them surgically repaired, and I am worlds better. The cysts were in fact the source of my PN.
Now truth be told, a tarlov cyst is viewable on a regular ol' MRI of ANY kind - I could have got the same info from a plain pelvic MRI done locally. However there might be some other abnormalities which are viewable on the MRN but not on a regular pelvic MRI. I just am not sure. My local doc took a glance at the MRN, which was read in vivid detail by Dr. Filler, and pronounced it "kind of blurry". So I really don't know the actual diagnostic value vs. the showmanship / salesmanship aspect.
I don't see how there can be horror stories. An imaging study can't hurt. I think the part that can turn into a horror story, is when you let a particular physician take over your treatment decisions based on their interpretation of imaging study results. Get the data for your edification and keep control of the decision making process.

[stephanies]

I agree HM, images can be very useful in some cases andcompletely useless in others. At the very least, they can provide some insight into what is going on in your body in a non-invasive way. I chose surgery with Dr. Filler 8 years ago mostly based on his MRN and I now wonder if that was the right choice for me. One fellow PN patient was told by Dr. Potter that her nerve was clearly entrapped in scar tissue and she needed PN release surgery and she got much better without PN surgery. It is one of the things that makes this conidition so frustrating and so difficult to deal with. I am going soon for my first MRI since prior to my 2006 surgery next month. My best to you.

[kathyd]

Hi StephanieS , Her Majesty and everyone
Stephanie,
Im so glad to hear your rectal and other pain reduced to such a low level ! That's great!
What brought your pain down?
Im sorry if Ive asked this already,but what type of rectal pain did you have? Was PT what helped? Are you in the NYC area?
Sorry for the questions, but if you are in the NY area we may have seen some of the same practitioners.
My most recent PT, Amy S. in NYC recommended re-committing myself to PT once to twice a week, which in my condition, would be tough logistically
I had lots of PT over the years with not much change.. but when the sit pain first kicked in , the PTs just weren't able to tell me where it was coming from and why!
I tried so hard to nip it in the bud, but the PTs I saw couldn't find anything..I had assumed they weren't PN savvy just yet This was before I met Amy S.

I want to re-start with Amy but my hubby (my driver! is reluctant to invest the time and $$ on something that didn't work before.) My pain is different now...much worse.
There is a local PT whom Amy referred me to, She is considered very good, but was one of the folks I saw in the past..who was unable to come up any reason for my early sit pain a few years My being very thin in the hips/and butt were cited as possible reasons!
She now has let me know clearly that she has had lots of PT education in pelvic floor issues since, and is well qualified, but also made the disclaimer that she would try but didn't know if she could help me as Im now "chronic" .I wouldn't be if anyone had been to diagnose me early on.
Ironically the NYC PT was eager to help me.
So its such a toss up whether it will help, or whether PT is just not for me.
Sorry for the long post !
Thx Her Majesty for the info, I also have a tarlov cyst which showed up on MRIs ...I am going to PM you when I can, if thats ok with you.
An MRN may be helpful in my case to maybe to see nerve issues that weren't visible on the MRIs, if they exist?
I have checked into the cyst issue quite a bit since they were noted in 2009, and am 50/50 as to whether they are my source,,
Some open-minded pain docs at Hosp for Special Surgery in NY who've seen many TC's in their time, didn't think so. They carefully considered it and studied my films with me.
Im very wary of the whole issue as I don't want any more surgery based on uncertain outcomes and little data
and my past history with surgery. Also I must honestly admit that am anxious by nature (genetically) With this constant extreme pain and lack of success in finding answers, my anxiety is major part of my picture .. my pelvic floor is constant "fear mode" ..thus in spasm! Its hard to know what's' what!
Im happy that it worked out so well for you tho!
You have provided much info for all of us and I appreciate it..
Thx ladies


Thanks..

[Dr. Jason G. Attaman]

The best surgeon to evaluate a peripheral nerve problem is 1. A Neurosurgeon; 2. A Plastic Surgeon and 3. an Orthopaedic Surgeon depending on their specialty and geographical location/ experience.

In general, one would think a neurosurgeon would be the best person to evaluate a peripheral nerve problem. But we are not talking about the "usual" peripheral nerves here. We are talking about the pudendal nerve, a nerve that hardly any neurosurgeons care to think about or base their practices on. Please don't discount Dr. Hibner or Dr. Antolak's knowledge of the pudendal nerve. They are, a gynecologist and urologist, respectively, but have devoted time, education, and practice to their study of the pudendal nerve. I may be leaving out another doctor or two as well who aren't neurosurgeons. I do believe, and correct me if I am wrong, that Dr. Bautrant in Aix is a gynecologist as well.

This is very true. I have spoken to many neurosurgeons, plastic surgeons, OB/GYN, and orthopeadic spine surgeons in my State of Washington to find anybody who would be interested in performing these surgeries for my patients. Not a one has any formal training in residency or fellowship regarding surgery to this nerve. Not a one has any desire to start doing it either. I was shocked to learn that these highly trained specialists had no training in pudendal nerve surgeries, but this is indeed the case. In this particular case, go with any surgeon who has experience operating on this nerve.