3T MRI or an MR Neurography?

PNMLT, EMG, SSEP, and other Nerve function testing.
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3T MRI or an MR Neurography?

Postby RiseAbove » Tue Mar 11, 2014 8:32 pm

Hello. I'm hoping you all can help me. Since 2006, maybe even longer, I have been experiencing burning pain in my butt, back of both thighs, and even in my penis. After years of not being helped by doctors, I did my own research and came across pudendal nerve entrapment. I really feel that that is what I've been suffering from all of these years. I tried talking to different neurologists, and even a physiatrist, about it but they just don't take me seriously. They won't listen. After more research, I learned about MR neurographies and 3T MRIs. I tried to get a neurologist to write me a referral, but he refused. I don't understand why it is so difficult for a neurologist to write me a prescription so I can get a test done to check my nerves. Can anybody tell me what would be more beneficial to have? I live in NJ and, because of stomach problems and anxiety, it is difficult for me to travel. However, I will do so if it will help me. Thank you.
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Re: 3T MRI or an MR Neurography?

Postby egley » Tue Mar 25, 2014 6:23 am

Hi RiseAbove,

I cannot speak to the MRI or MR issue.

But I can say something about a PNE diagnosis.
In my opinion, Dr Weiss in San Francisco had the easiest and reasonably accurate way to diagnose.
He would inject, I want to say lidocaine, but it was definitely one of the numbing drugs, into the pudendal nerve area. If your symptoms disappeared, you had PNE.
At least I was convinced after this procedure. My symptoms totally disappeared a short time after the injection. It was so black and white.
Nothing fancy or complex.

I know this is on the other side of the continent, but perhaps a PNE doctor in your area could perform this very simple procedure for you. I say PNE doc because I'm worried other doctors might now know of exact position of PN. I could be totally wrong about this, it is just a concern. Seems it would be worse to come away with a wrong diagnosis because of something like this than to do nothing.

All the best to you!

Sincerely,
Skip
Right testicle pain started ~2005
Stanford Pain clinic (~2007).
Dr Weiss diagnosed PNE; said I needed to go to Hibner for surgery (2010'ish). Sorry, no surgery for me.
Neuro-stim (~2012); pain pump 13 or early 14.
Pump removes leg spasms (from neuro-stim surgery) but only maybe 25% of PNE pains.
Still hunting for the holy grail of 0 pain from PNE.
Prialt and fentanyly in pain pump (10 bolus/day allowed); Oxycodone (4x/day)
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Re: 3T MRI or an MR Neurography?

Postby stephanies » Wed Mar 26, 2014 12:46 am

Skip,

While a successful nerve block indicates that the PN is involved in pain it does not positively diagnose PNE(ntrapment) vs. PN which can be a nerve irritation from a source other than an entrapment.

Sincerely,
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: 3T MRI or an MR Neurography?

Postby egley » Fri Mar 28, 2014 6:44 am

Hi stephanies,

I'm certainly no expert in the pudendal nerve. Thanks for the correction.
Just wanted to share what I did know (even though it is not quite correct).
Can only hope it is useful to RiseAbove.

Sincerely,
Skip
Right testicle pain started ~2005
Stanford Pain clinic (~2007).
Dr Weiss diagnosed PNE; said I needed to go to Hibner for surgery (2010'ish). Sorry, no surgery for me.
Neuro-stim (~2012); pain pump 13 or early 14.
Pump removes leg spasms (from neuro-stim surgery) but only maybe 25% of PNE pains.
Still hunting for the holy grail of 0 pain from PNE.
Prialt and fentanyly in pain pump (10 bolus/day allowed); Oxycodone (4x/day)
egley
 
Posts: 32
Joined: Fri Sep 17, 2010 6:43 pm
Location: Calee-forn-eye-ay

Re: 3T MRI or an MR Neurography?

Postby stephanies » Sun Mar 30, 2014 12:19 am

Hi Skip,

I also hope we are able to help RiseAbove and I appreicate your sharing your experience with nerve blocks. I know the pudendal neuralgia vs. pudendal nerve entrapment distinction is a difficult one to make for many of us and our doctors as well.

All my best,
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: 3T MRI or an MR Neurography?

Postby RiseAbove » Fri Apr 04, 2014 8:32 pm

Thank you, guys. I appreciate the info.
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Re: 3T MRI or an MR Neurography?

Postby Violet M » Tue Apr 15, 2014 4:26 am

Rise Above,

We developed a handout for medical professionals that you can take to your physician. You can find it at the beginning of this thread.
viewtopic.php?f=3&t=953

If your physicians won't listen to you, it might be time to see someone else. Many of us have been to numerous doctors before we found one who would help. My neurologist told me to see a psychiatrist and said that neurologists don't treat nerve problems. So, I understand your frustration and unfortunately sometimes you just have to move on. You can see the list of PN docs and physical therapists from the homepage at pudendalhope.org.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: 3T MRI or an MR Neurography?

Postby Positivepoppy » Tue Apr 15, 2014 7:26 am

Hi riseabove
I had CT guided bilateral nerve blocks that caused a massive flare up. I also had diagnostic testing using a high quality ultra sound and was told that bilateraly both arteries were sluggish which was suggestive of PNE. This was my experience and consequently had PNE surgery. In my limited experience e once and listening to both others unveils seem that consultants globally have different ways of testing and diagnosing.
I wish you t h e very best of luck don't give up there is help out there for you
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Re: 3T MRI or an MR Neurography?

Postby ColSkiier36 » Wed Jun 18, 2014 2:53 pm

Hey Skip,
I've been to several Doctors as well, I found a neurologist who specializes in nerves, first visit he ordered two MRI's and meds. NO other Dr offered me any meds! I have been suffering with burning pain for 10 months, one pill from the neuro and the burning sensation is gone; but the side effects are yucky. I still have to get the MRI so I don't know what it will show. I had burning symptoms before my hysterectomy, I went to a GI Dr. she ordered a CT Scan, which came back normal and said "I will not order an MRI because it is an expensive test" Well I saw several OBGYN and they thought it was endometrosis, I had my uterus and left ovary removed; and guess what? The burning pain came back but worse and in the urethra which I didn't have before the hyst. also along with pelvic floor issue. Be your own advocate! Don't listen to ONE Dr. and keep on fighting. Listen to your body! I have been offered surgery 5 times but no MRI! That doesn't make sense, I never had an MRI before, not even before they removed my female organs! It is frustrating, but if one Dr won't listen move onto the next. I can tell you abdominal massage and acupuncture helped me before I got the meds, but what may help one person may not help another. Good luck and hang in there!
Pelvic Pain started 2008 Endometrosis diagnosed May 2012 Partial Hysterectomy w/ left ovary removal Nov 2012
Urinary issues and pelvic floor issues Sept 2013 InterStim Trial May 2014 (worked but opted for no surgery)
Diagnosed Pudendal Nerve Damage May 2014 Diagnosed Urinary Retention May 2014
Currently exploring options to heal!
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