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

[Karyn]

Hermajesty,
Did you ever hear back from Filler?
Hugs,
Karyn

[Susanjane]

Hilary, from your post:

"- perhaps the diagnostics is already beginning to run ahead of the treatment that can be offered anyway."

Absolutely pertinent, especially here in the UK. It will be one thing having a clear idea of what and where the problem is but the next step will be wanting to "do" something with it!

[Charlie]

I signed up to Dr Filler's nervemed email list and received this today. Obviously it is written by Fillers office so it is clearly heavily biased. I get the feeling they are reading this forum.

Magnetic resonance neurography - the technology used by The Neurography Institute to image nerve tissue and diagnose nerve-related conditions - is a patented technology licensed exclusively to The Neurography Institute. This exclusive status has led to some interesting yet incorrect speculation.

Let's clear it all up with some facts.

Dr. Aaron G. Filler, MD PhD, founder of The Neurography Institute, is an inventor of the patented MR neurography process. However, he is not the patent owner; that distinction belongs to the University of Washington, where Dr. Filler was a neurological resident at the time of the discovery. (In virtually all cases, universities retain ownership of innovations discovered by their student and staff researchers.)

Dr. Filler does not collect patent royalties on MR neurography; the University of Washington does. The Neurography Institute (of which Dr. Filler is the director) actually pays the university a royalty for every MRN scan performed.

MR neurography is far more than just installing some software on MRI hardware and cranking out scans. It is a delicate, difficult medical imaging process (owing to the invisibility of nerve tissue) that requires extensive medical staff training in correct imaging protocols. Moreover, once the scan is complete, a successful MR neurography scan goes through extensive post processing, 3D formatting and neuroradiological reading by trained experts. All of this is required in order to properly read and diagnose a medical condition (if any) revealed in the imaging.

As you are probably aware, there are a tremendous number of facilities purporting to provide "neurography" scans. These facilities are not equipped with licensed software nor are the staff trained by The Neurography Institute in image reading. Simply put, they do not provide genuine or accurate neurography scans in any form. It is misrepresentation to call these scans "MR neurography."

Sadly, many who benefit from offering scans they call "neurographies" have taken to disparaging Dr. Filler and his invention, making unfair and damaging claims against him and the MR neurography process, simply because they are facing the consequences of misrepresentation. This is an unfortunate consequence of innovation; copycats attempt to generate income from the invention, defending their indefensible actions by denigrating the innovator.

The bottom line is this: only the Nerve Scan Centers of The Neurography Institute (more than a dozen now, and counting) offer genuine magnetic resonance neurography scans. Each scan is specially processed and read by the most experience neurography team in the world, the staff of The Neurography Institute.

Trust your health to the people who created the technology and are the most experienced in reading your scan - the neuroradiologists and neurosurgeons of The Neurography Institute.

[HerMajesty]

Hi Karyn,
I got something today but read it on the cell phone while out running around...and there was an attachment I could not open on the cell...will post what is pertinent when I have a chance to digest it.

[ezer]

While my MRN report did not mention fibrosis it predicted correctly the blood vessels bundle found during surgery and affecting the pudendal nerve. I feel that the MRN was also worth it for the fact that my GP took me more seriously after seeing the report and was more willing to work with me and prescribe proper medication. As soon as they hear pelvic pain, many doctors assume you have some underlying psychological problem.

[HerMajesty]

MRN anonymous scan.pdf

(121.45 KiB) Downloaded 331 times

Well here attached above is the amended MRN report sent after Dr. Filler took a second look - it offers a beneign explanation for the fluoroscopic abnormalities. The 1st page and top of the 2nd page is the original MRN report, and the 2nd page starting from the line "Three-Dimensional Reconstruction and Analysis" is the new look he took at it. I have concluded that I do not wish to do the 3T - I do not believe more imaging is the answer to my issues. I believe the MRN has told me the important aspects of my condition: Some entrapment might be occurring at the piriformis level and I might get some relief when I finally get the piriformis muscles botoxed; but in general myself and my trusted local practitioners are in agreement that the majority of my remaining symptoms correlate too perfectly with my tarlov cysts to be originating from another source. I have another thread about the tarlov cysts and won't repeat here.
I have not posted my imaging results on this site before, so any constructive commentary on the results is welcome.
Here is the remainder of the exchange between myself and the employee from Dr. Filler's office:

Dr. Filler Office Staff:

"my apologies in delayed follow up. We sometimes get hundreds of emails and between my other job responsibilities I am not always able to follow up right away, however, I did want to ensure that your request had proper response so I did speak with both the nurse practitioner and Dr. Filler regarding your consult and the next step planning. To be clear the MR Neurography is intended to provide to lend support to what the treating doctor has deduced thus far, and the Interventional MR is used in tandem with the MRN results to confirm diagnosis and findings. Because it is magnetic resonance based it would allow for findings definitively as to whether or not the pudendal nerve was entrapped in scar tissue or not. The process of using the MRN nerve scans and then using the IMR real time guidance to inject the actual nerve and study the after effects over the course of the next few days is what provides the definitive answer and this is why Fluoroscopy or CT in which scar tissue is not visible was not recommended. The best part about the Interventional MR procedure is that while confirming diagnosis it is also a therapeutic procedure in which we have several patients who have had abatement of symptoms and have not required surgery or additional pain management treatment after the IMR. This is not a marketing ploy to make money (we spend way more to provide the procedure than is ever reimbursed) or to get people to come here and have the procedure, it is simply a fact that the IMR is the highest standard of care for diagnostics and therapeutic treatment of peripheral nerves that is often copied but whose results are not achieved. The double blind patient outcomes that are reported in peer reviewed medical journals testify to the IMR method and I am only sorry that you do not have this available within your insurance network and closer to home. In comparison, injections by Fluoroscopy, CT, ultrasound etc. are considered to be shots in the dark for peripheral nerves.
We certainly understand that you are the decision maker for your health and body. Additionally, we only try to educate patients to provide as much information regarding the standard of care so as to improve the quality of care that may result from your decisions. I asked Dr. Filler to provide a review of your MRN and to make specific addendum for the image views that will hopefully help your treating doctor get closer to the target location. I hope that this helps. Best regards and best of luck with your treatments."

Me:

Thank you for your prompt resonses and please thank Dr. Filler and any other staff who took the time to take a second look at my images. The fact that the MRN was in fact able to explain the findings of the fluoroscopy was reassuring to me. I will keep in mind all that you have advised me while I make my care decisions, and appreciate your taking the time to respond to my concerns at length.

[AliPasha1]

Hello Hermajesty,
It is very clear from Dr. Fillers MRN that it isn't as detailed as Dr. Potter's report.He is concentrating only at the piriformis muscle and the ischial spine.There is no mention of the Sacrotuberous ligament as well as the Alcock's Canal as well as the branches of the Pudendal Nerve.It is quite evident that his 1.5 Tesla MRN has certain limitations.
It seems that he is more concerned about CT quided injections.
3 Tesla MRI by Dr. Potter is more clear and very much in depth.Pianogal could testify to that because she had MRN with Filler as well as 3 Tesla MRI with Dr. Potter.
The lack of detail in the MRN analysis by Dr. Filler is a key reason why Dr. Hibner wouldn't accept Dr. Filler's MRN as a dignostic tool.It lack's the depth analysis which is being provided by Dr. Potter.
Dr. Potter is the best out there at the moment as far as PNE imaging goes.

All the Best,
Ali

[HerMajesty]

Ali,
I believe Dr. Filler was "charting by exception", meaning the report describes significant abnormal findings and ignores normal or clinically insignificant findings. I am sure Dr. Filler noticed normal sacrotuberous ligaments (normal tone was restored in these manually, 6 months prior to the imaging test, with reduction in symptoms); and did not bother to write anything about them. As an RN married to Paramedic I can tell you that charting by exception is a standard, accepted medical practice.
As I said at the start of this thread, I am totally neutral in the "what is better MRN or 3T" argument...I had never even heard of the 3T at the time I got the MRN, so did not need to make a choice.
But, I can say without reservation that I am satisfied with what I got for my $$$ and believe Dr. Filler and the Neurography institute gave me appropriate, thorough, and courteous care.

[Celeste]

Ali,
I believe Dr. Filler was "charting by exception", meaning the report describes significant abnormal findings and ignores normal or clinically insignificant findings.

For real, that is more efficient. Otherwise it would be like making a grocery list that also has included all of the supplies that you already have enough of!

[ezer]

hermajesty,
I completely agree. My MRN report has a thorough description of what is abnormal including tendons and other obstacles. But the rest is just reported as normal. My report is quite different from the one you posted so obviously it is not just cookie cutter reports claiming PNE problems.