MRI Results Questions

Discussion of magnetic resonance imaging and magnetic resonance neurography

MRI Results Questions

Postby JackieOUCH » Sat Jun 29, 2013 6:08 pm

Hi Everybody,

Just had an MRI in which they tried to recreate Potters' Protocol, but I have no way of knowing if the local radiologist knows how to read it or if it was truly done to specification...etc.....

When I called for results, this is all the nurse read: "No pelvic anatomical abnormality to explain Pudendal Neuropathy"

This was a bit of a shock as I am made worse by so many physical positions/actions.

So if there's truly not an anatomical explanation (scar tissue on ligaments...etc....)....What' left? A disease process? Well I've been tested for everything twice and all is negative. I don't think my pain is from the Endometriosis I had either.

My neurologist thinks there are many nerves involved.

Has anyone had a so-called Potter MRI at another medical center and sent the MRI to Potter for interpretation?

Any thoughts, theories, feedback appreciated. I'm sick of trying to figure this out.

Less pain,

Jackie OUCH
Started with severe burning sacral pain to R hip/pelvis, bladder, bowel
History Endometriosis
Antolak Diagnosed PN--1 PN block made pain much worse & more widespread for a year
PT 2 yrs--Did not help physically, but was educational
Potter MRI: Symmetric thickening Sacrotuberous ligaments/scarring ischial & Alcocks canal. PN likely entrapped
JackieOUCH
 
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Joined: Thu Oct 28, 2010 7:06 pm

Re: MRI Results Questions

Postby janetm2 » Sat Jun 29, 2013 8:10 pm

Jackie,
So sorry the test was not conclusive. Unfortunately there are no truly conclusive tests for PN and PNE from what I have seen but rather the PN doctor pulling together bits from your case, symptoms, life events, and the tests. I was clearly PNE but that did not show up on the MRN I had. If Antolak and Hiber think you have PN I would probably take that over the MRI, although it would be better if you had some proof and the statement certainly sounds like it is not PN? I did get relief with the nerve blocks and no extra pain so that gave me better proof, again sorry you are not having better luck. Maybe someone else has better info on whether the there is another reason I am not sure all PN and PNE would be pelvic anatomy since my PNE was due to tightening of the two main ligaments basically squashing the pelvic nerve.
Janet
2007-08 pelvic muscles spasms (per colon-rectal dr.) treated by ElectroGalvanicStimulis(EGS). 6/27/10 sat too long on a hard chair- spasms, EGS not work Botox help, spine pain dr 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 started/surgery at age 21. TG gave me back enough sitting to keep my job and join in some social activities. I wish the best to everyone!
janetm2
 
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Re: MRI Results Questions

Postby JackieOUCH » Sat Jun 29, 2013 8:19 pm

Thanks for your reply Janet.

Hibner did not really think I had PNE.....He thought the PN was affected, but the main culprit was something else.

From what I understand Antolak diagnoses EVERYONE he sees with PNE.

You bring up a very good question about whether or not all areas of the pudendal nerve would be covered by "pelvic anatomy"....such as the ligaments...etc......

Was your surgery successful?

I hope so.

Thanks again,

Jackie
Started with severe burning sacral pain to R hip/pelvis, bladder, bowel
History Endometriosis
Antolak Diagnosed PN--1 PN block made pain much worse & more widespread for a year
PT 2 yrs--Did not help physically, but was educational
Potter MRI: Symmetric thickening Sacrotuberous ligaments/scarring ischial & Alcocks canal. PN likely entrapped
JackieOUCH
 
Posts: 57
Joined: Thu Oct 28, 2010 7:06 pm

Re: MRI Results Questions

Postby janetm2 » Sun Jun 30, 2013 12:06 am

Jackie,
I am saying there is success not fully but I am glad I had the surgery because I felt it would get worse. The pain levels are down and I take meds as needed and no longer take them daily. There are still limits but I am able to work 80% or so which is enough until I retire in 2016. I can sit and go out to eat but still get up as much as possible especially at work. I am learning my limits and what puts me out of pelvic alignment which is one of the challenges since surgery. I hope you find a way to lower your pain and get a treatment plan. Take care
Janet
2007-08 pelvic muscles spasms (per colon-rectal dr.) treated by ElectroGalvanicStimulis(EGS). 6/27/10 sat too long on a hard chair- spasms, EGS not work Botox help, spine pain dr 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 started/surgery at age 21. TG gave me back enough sitting to keep my job and join in some social activities. I wish the best to everyone!
janetm2
 
Posts: 947
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: MRI Results Questions

Postby HerMajesty » Sun Jun 30, 2013 2:22 pm

Some differentials to look into that would not show up as pudendal compression on an MRI: Pathology of the spinal nerve roots instead of within the pelvis, hernia, SIJD, pathology of the pubic symphysis, neuropathy of the nerves within the inguinal canal (ilioinguinal, genitofemoral, iliohypogastric). Probably lots more.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
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Re: MRI Results Questions

Postby Karyn » Sun Jun 30, 2013 2:45 pm

Hi Jackie,
I had a 3-T MRI last summer with someone who was supposed to be the equivalent of Dr. Potter. Not so much. They didn't pick up any abnormalities and even commented that my SSL's and STL's appeared in tact. :shock: I don't have SSL's. ;)
Because I had an MRI with Dr. Potter a couple of years ago, my ordering physician made arrangements for me to have Dr. Potter re-read the imaging study. To make a long story short, she wasn't able to read the images as presented. She did note the absence of my SSL's, though. :D
JackieOUCH wrote:You bring up a very good question about whether or not all areas of the pudendal nerve would be covered by "pelvic anatomy"....such as the ligaments...etc......

Good question, indeed! I recently had yet another pelvic MRI. I spoke with the Tech before the procedure, asking if the radiologist reading my images would be able to detect soft tissue abnormalities (Ishcial Tuberosities, ligaments, hernia, neuroma, scarring, rectus abdominous, etc ...). I also made a point of explaining that I had a total hysterectomy a few years ago and was well aware that I don't have a uterus or ovaries anymore. The Tech replied, "Of course! They're all part of the pelvis, after all!" She even noted my concerns for the radiologist. So, I get the report and it states: The uterus and ovaries are not visualized, consistent with surgical history. No intrapelvic abnormality except for post surgical changes. Sigh ....
And yes, they were aware of my PN decompression and abdominal neurectomies. For some reason, these were overlooked. However, he did note:
I do not see a clear abnormality of the sacrum except for incidental presence of a 1.7 cm Tarlov Cyst in the sacral canal along the distal sacrum.
Unfortunately, you may have to go to NY if you really want to get to the bottom of your pelvic pain. Dr. Potter is not in the habit of reading other radiologists images; especially if you've never been to HSS before. And even then ....
Hugs,
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.
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Karyn
 
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Re: MRI Results Questions

Postby JackieOUCH » Sun Jun 30, 2013 4:05 pm

Thanks so much for your replies!

I was afraid of this. I will probably have to go to New York, but you all know how hard it is to travel with this problem.

It never ends.

Jackie OUCh
Started with severe burning sacral pain to R hip/pelvis, bladder, bowel
History Endometriosis
Antolak Diagnosed PN--1 PN block made pain much worse & more widespread for a year
PT 2 yrs--Did not help physically, but was educational
Potter MRI: Symmetric thickening Sacrotuberous ligaments/scarring ischial & Alcocks canal. PN likely entrapped
JackieOUCH
 
Posts: 57
Joined: Thu Oct 28, 2010 7:06 pm

Re: MRI Results Questions

Postby Karyn » Sun Jun 30, 2013 4:14 pm

Agreed, Jackie. We really don't travel well. :(
I wish you the very best, with whatever you decide!
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.
User avatar
Karyn
 
Posts: 1668
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA


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