Potter MRI results

Discussion of magnetic resonance imaging and magnetic resonance neurography

Potter MRI results

Postby Lily721 » Thu May 28, 2015 5:46 am

Hi all

I got this MRI 4/14. Not sure I posted much about it. I was re-reading it tonight and wondered how coccygeus muscles could be atrophied and 'symmetrically atrophied' at that. I mean I can't imagine what a coccygeus muscle would do or how one could keep it in good shape, know what I mean? And then to have them be atrophied?

It also says I have scarring of the capsular ligaments, among many other things. It's so frustrating to get these tests done and then not be able to discuss any of it with anyone. I showed Dr. Goldstein and someone at Chapman's office and it's like none of it is significant so I just accepted that none of it was significant but I have a lot of little things.

Wondered if anyone else had these results.
Thanks L
Lily721
 
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Re: Potter MRI results

Postby ezer » Thu May 28, 2015 5:56 am

My surgeon completely ignored the results of his own MRN and did the surgery on an area that was deemed unremarkable on the scans. It shows how little information (if any) can be derived from those. More pseudo-science.
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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Re: Potter MRI results

Postby Lily721 » Thu May 28, 2015 6:57 pm

Hi Ezer

I tell you, I'm terrified of any surgery. I sit here sometimes and wonder if I'll need a hysterectomy some day or an appendectomy. I have so little faith in Dr.'s that the thought of surgery is terrifying. That being said, I know many people who have had multiple surgeries and they are ok. I wonder why your Dr. chose a different area to operate on? Was he basing it on your symptoms or something he felt?

I see you are feeling better though. I'm glad to hear it! What mind modalities did you try? I know I'm stressed out... always have been. I had a bad household as a kid and young adult with a violent alcoholic. I can only imagine how tense that made me (no sexual abuse luckily) He's dead now so no more fear about that. But my symptoms started before that. I had constipation and urinary frequency at 4 and 5 years old... not sure why. I'm open to trying mind modalities if you care to share.

Man, I just had such a horrible memory. I couldn't start my urine flow as a toddler and/or I'd hold it in cause it hurt to pee. My Mother dealt with it pretty well but one day my Father popped in (he was like a stranger to me) and decided in his drunken state to seek me out in the bathroom and he sat on the edge of the bathtub and started saying pee for Daddy LOL (it's really not funny) but I was so terrified. That's how I remember that my urinary stuff started decades ago. I'd really love to know what it is.

Anyway, I love to hear of success stories. It's like scoring one for the little guys against the big bad monster that is pelvic pain. EZER!!

L
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Re: Potter MRI results

Postby stephanies » Thu May 28, 2015 7:22 pm

I think MRIs/MRNs can be useful to rule out something obvious, like a tumor. However, with this condition I think the nerve is too small to really see what is going on with it and what is seen (and thus what may be treated surgically or otherwise) may not actually be the cause of the pain. For example, what is noted about your atrophied muscles is interesting, but is it likely to be contributing to your pain? These are hard questions to answer sometimes. Sending healing thoughts your way.

Stephanies
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.
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Re: Potter MRI results

Postby ezer » Thu May 28, 2015 8:41 pm

As unbelievable as it sounds my surgeon decided to switch to operating on the Piriformis based on the feedback I gave him on the phone following the nerve block he administered. It was not based on examination.

You can read about my mindbody experience. You can search for mindbody on the search function. With the trauma you had in your childhood, you should really explore that path first before considering invasive procedures.
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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ezer
 
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Re: Potter MRI results

Postby ezer » Thu May 28, 2015 8:44 pm

Stephanie, you are right. What is disturbing are physicians that claim that they can find the exact location of an entrapment based on imaging. In retrospect, I never had an entrapment despite both the MRN and 3T MRI that were showing entrapment at the alcock's canal.
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
User avatar
ezer
 
Posts: 712
Joined: Sun Sep 19, 2010 6:53 am

Re: Potter MRI results

Postby Lily721 » Thu May 28, 2015 11:57 pm

Wow

So you're saying that not only can MRI's, at times, not show an entrapment that is there, they can suggest one is there when it isn't? It's all so hard - this whole thing. Not even to be able to trust results, or properly discuss results.

And basing your operation on feedback over the phone is pretty startling. Doctors scare me (as I said above)

My problems started before any trauma (that I can remember) I think I was born this way (whatever way this is) Either with PNE or with some kind of urinary condition. And, yes, do atrophied muscles have anything to do with my pain? My gut guess is no... but then again, who really knows. I wish a Dr. had at least an opinion on it but I never got to talk to anyone really. I've often thought of taking the results to another physiatrist but then I just come around to the why bother feeling that I get a lot. I perk up and then I go back down the rabbit hole. I perked up in 2014 and now the rabbit hole is here. Amazing how it can actually be ticked off in years.

I will search your mind modality. :)

p.s. I've been in psychotherapy for years as a matter of routine (in my life) You'd be surprised how hard it is to find a consistently good psycho therapist. I'd say it's as hard as finding a good Pelvic Pain Dr. They can only do so much. It really comes down to what we can do in our own minds sometimes, which, I get the feeling you understand Ezer
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Re: Potter MRI results

Postby ezer » Fri May 29, 2015 12:54 am

lily, I think the MRN shows nerve compression by muscles spasming, not an entrapment per se. It definitely showed asymmetry in my pelvis which is consistent with years of muscles squeezing the P-nerve. My P-nerve was inflamed and painful. But jumping to the conclusion that it is an entrapment is not scientific.

A mindbody cure I think has to be done by yourself. You and only you can do it. Talk psychotherapy is hit or miss. It is mostly a miss when it comes to mindbody healing.
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
User avatar
ezer
 
Posts: 712
Joined: Sun Sep 19, 2010 6:53 am


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