MRNs

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solarmom
Posts: 46
Joined: Sun Nov 30, 2014 10:17 pm

MRNs

Post by solarmom »

Hi,
I probably haven't read every post related to this, but have been wondering about the MRN.
The Neurography institute indicates that there are several geographic locations with MRN, yet posts on this board have mentioned only Hollis Potter and Aaron Filler.
Everyone seems to love Hollis Potter, but are there published results indicating that her determinations of entrapment locations map to those found upon surgery, or is there only anecdotal evidence? Hollis Potter has 143 citations on pubmed, but I can't seem to find any related to pudendal nerves.

I have also heard Aaron Filler's name mentioned often, although usually not positively, either due to cost or effectiveness. Since he seems to have invented the MRN technique, it is surprising to me there aren't more positive results reported here. Also, the medical paper listed on the neurography institute website presents data from 2009 and that is his only pudendal reference listed on pubmed. Is there anyone who had surgery with him with a positive outcome?

-solarmom
stephanies
Posts: 683
Joined: Mon Oct 25, 2010 3:07 am

Re: MRNs

Post by stephanies »

I had surgery with Filler, no positive outcome. I have gathered from speaking with doctors over the years that MRIs/MRNs are useless in determining entrapments and/or for making surgical decisions. Of course, all pelvic pain patients should have an MRI to rule out other conditions, such as tumors, etc., but as far as finding entrapments that correlate to surgical findings and thus a successful outcome, I don't believe that has been validated.
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13. Pain reduced significantly beginning around 11/23.
stephanies
Posts: 683
Joined: Mon Oct 25, 2010 3:07 am

Re: MRNs

Post by stephanies »

The Neurography Institute is Aaron Filler. Don't believe the hype. Keep reading and searching on this forum about him and his "technology". As far as Dr. Potter, I know several people she diagnosed with entrapments they were led to believe were the cause of their pain and they recovered by means other than surgical release of the "entrapments".
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13. Pain reduced significantly beginning around 11/23.
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ezer
Posts: 689
Joined: Sun Sep 19, 2010 6:53 am

Re: MRNs

Post by ezer »

I had the MRN that diagnosed me with PNE at the alcock's canal. But then a few days before surgery, Dr.Filler changed his mind and decided to ignore his own MRN findings and do surgery at the piriformis instead. Go figure. The surgery was completely unsuccessful.
2002 PN pain started following a fall on a wet marble floor
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: MRNs

Post by Karyn »

Hi Solarmom,

Perhaps these articles may be helpful:
Peripheral Nerve Surgery: The Role of High Resolution MR Neurography
http://www.ajnr.org/content/33/2/203.long

MR Neurography of Neuromas Related to Nerve Injury and Entrapment with Surgical Correlation:
http://www.ajnr.org/content/31/8/1363.long

Kind regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
IHatePNE
Posts: 28
Joined: Thu May 22, 2014 3:47 am
Location: Toronto, Ontario Canada

Re: MRNs

Post by IHatePNE »

Your options are not strictly Potter protocol 3T MRIs or Neurography Institute MRNs as MRNs are also offered at Johns Hopkins they use a 3T machine and different software though I don't have the credentials to tell you if its any better or worse than the Neurography Institute's (aka Dr. Filler) MRNs. Dr. Filler's Neurografix company has actually filed a lawsuit against Johns Hopkins citing patent infringement:

http://www.neurografix.com/news/neurogr ... t-dispute/

Neurography Institute also has a section on their website where they advise patients to "avoid imitators":

http://neurography.com/about-mr-neurogr ... -imitators

Whether this caution is warranted or not on quality grounds I couldn't tell you. There are not many posts here regarding non-Filler MRNs I can only remember a someone mentioning Dr. Marvel sending them for one. This is unfortunate as I am really interested in the subject of non-Filler 3T MRNs as an alternative to Filler MRNs and Potter Protocol 3t MRIs. Anyway that's all I have to say I just wanted to point out that your options are more than just Potter and Filler.
solarmom
Posts: 46
Joined: Sun Nov 30, 2014 10:17 pm

Re: MRNs

Post by solarmom »

Thank you all for the info!
I called the neurography institute to see if there was one near me. She also said they are out of network and bill at $4020 which I think covers the scan and radiologist review? if Filler invented the thing why should i need the diagnostic scan done only at his office? Or why do i need to fly all the way to new york or baltimore? i really dont want to burn thru my babys college fund for this.
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ezer
Posts: 689
Joined: Sun Sep 19, 2010 6:53 am

Re: MRNs

Post by ezer »

The MRN is a modified MRI. It uses different coils and software to image nerves. Then Dr. Filler himself reviews the scans and acts as the radiologist.
2002 PN pain started following a fall on a wet marble floor
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
solarmom
Posts: 46
Joined: Sun Nov 30, 2014 10:17 pm

Re: MRNs

Post by solarmom »

Hi Ezer,
Thank you for responding. I know you have reviewed the patent and have experience in imaging. So the MRN has different coils and software than other 3T MRI?
Also, I have had numerous MRIs, including a cardiac MRI, but I now realize that I'm not sure if I can even have an MRN because it uses 3 Tesla instead of only 1.5 Tesla (I have a cardiac stent plus other metal in my body). Are you aware of issues related to this?

Thank you again.
janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: MRNs

Post by janetm2 »

Fyi I may have been the"Dr Marvel sent to Johns Hopkins MRN" Patient, either way for what it is worth this is what happened in my case. Dr Marvel said the MRN was done to " rule out other things" but never said what so it did not appear to be done for diagnosis relating to PN or PNE. It did not say anything on the MRN report about PNE but when Dr Marvel did my decompression surgery he said in the report that the pudendal nerve was entrapped by the two ligaments and he did the release to fix it. I had left TG surgery and have improved.
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
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