Joyh wrote:
I explained it was terrible pain in my pelvic area, down to my genitals - his reply was that my recent CT and deep pelvic scans would have picked Prudential Neuralgia up.
He said that the hospital would`ve looked out for that and many other things.
Now I`m confused!!
Joy
Probably not as confused as he is
Utter Tosh!
Obviously don't say that
but it's true. . . . .
No imaging is perfect, although nerve problems can usually be seen with a great deal of accuracy in the spine.
This is not because the image will show the actual nerve being impinged, but a herniated disc for instance, can be seen to be out of place. If it is out of place enough, it will be presumed to be compromising the nerve, as it is easy to have an idea where those nerve roots are in the spine. But you can't SEE nerves on normal MRI's.
So, given that the nerves can't be seen, when you get to the pelvis it is even more of a challenge because the course of the pelvic nerves can differ, from person to person.
For instance the pudendal nerve divides into three separate branches at some stage(s) along it's length. Sometimes the rectal branch may divide before alcocks canal, sometimes it may not. Although anatomically the nerve follows a similar path, it isn't the exact same path everytime. Therefore, if it's path can't be pinpointed exactly AND it's invisible, how on earth is anyone going to say without any doubt, that there is a problem with it 'somewhere' along it's route.
Even the newer neurography scans and 3Telsa scanners that have been set up to be able to view nerves, could not be called a fail safe test, diagnostically.
This imaging is in it's infancy and the team in Nantes, France (authors of the Nantes Criteria, regarded as th PN diagnostic bible) do not use imaging as they don't regard any results highly enough. This may all change soon, when surgeons do find imaging that can match up with what they find during surgery, but that hasn't happened yet (unfortunately)
Even if you'd had a 3 T scan or MRN there is no guarantee a problem can be seen as the image quality, coils and set up, soft wear for reading it and ability of radiologist can all effect the reading. These potential drawbacks with something that is far from accurate (yet) would make accurately diagnosing a pudendal problem almost a miracle.
As Dr Greenslade said in a letter to my Dr. in June this year. . . . 'In fact, the most experienced team in the world, in Nantes, France do not use this imaging at all as they have found it unhelpful'
Do you think that might do it? maybe someone could put it more politely?
I am trying to think of a paper where this is highlighted so that you don't have to come across as such a 'know it all', or worse still, 'know a lot more than they do'.
This is
THE reason why the diagnostic injections are so important!! and why you will
need the referral to someone who knows how to do them and knows what it's all about (for goodness sake!)
Well possibly the most up to date PN literature is from last years international continence seminar in Glasgow.
http://www.pudendalhope.info/sites/defa ... andout.pdf
Here is what Francesco Pesce, MD – Rome, Italy
(
pesce.f1@gmail.com) says about imaging
Imaging
Magnetic resonance imaging (MRI) of the lumbosacral spine and plexus evaluate the spinal cord
and nerve roots. Abnormalities are rare, including primary or metastatic tumors of unknown origin
in the sacral canal, pelvic floor hernia, and local recurrence of carcinoma of the rectum anterior to
the sacrum. Tarlov cysts usually are not the basis of patients’ complaints. Judet views of the hips
provide excellent images of the ischial spines. Magnetic resonance neurography is used by some
practitioners to assist diagnosis.
(at the moment I think this is only Dr Filler as he has a patent on his own MRN technology,brackets, not part of the paper) This technique awaits further study.
The only reason this "technique awaits further study", is because it hasn't proven it's worth yet, and this is the most up to date available.
Hollis Potters imaging in New York is regarded as the best so far, although many PN surgeons do not totally accept the findings. NYT, who is very knowledgeable just posted this;
nyt wrote:Dr. Potter spent alot of time perfecting the MRI for the pudendal nerve. There are things to consider such as the MRI machine, software for analysis, imaging sequences, the ability of the radiologist to read the scan. She uses a GE 3.0T machine. Not all MRI machines are created equal even if they are 3.0T machines. She uses special image sequences and software to analyize the images. However, she is now sharing her protocol with other radiologists. You can ask your dr. if they would be willing to contact Dr. Potter and see about her protocol. The other thing to consider is the ability of the radiologist to read the MRI. If she shared the protocol with your facility maybe she would be willing to read it also. From my personal experience it will be worth your travel. However, is money and the travel are a major problem for you than look into my above suggestoins. I had three normal MRI's before going to Dr. Potter and her results matched almost perfectly with my areas of complaints.
She explains it better than I can. This imaging is excellent but it isn't fail safe.
For signature go to control panel and then profile, you can add the signature there and change it when necessary.
If I think of anything else I will post it and someone e lse will probably have something better to offer too.
Good luck,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Thanks for that, it made me chuckle!