I fear that I may have PN.....desperate for some help

[lucky]

HerMajesty,



Thanks for the great info. I've already had an MRI of my pelvis, but the images were seen by a urologist (don't know if he'd know where to look for a Tarlov cyst). Anyway, as I think I mentioned earlier, I don't really experience pain in the perineum as much as a dull ache/burning sensation. As far as the tingling feeling in my foot and hand, it is constant. Balancing on my left side feels weird and unstable,grabbing things delicately will my left hand induces shaking, and sleeping on my left side makes my hand numb. I've also noticed that after doing any kind of exercise, my left side kind of trembles. Weird. I honestly don't even know what to hope for at this point-tarlov cyst or PNE/PN. So the EMG will almost definitely detect something? Even, perhaps, PN/PNE? The neurologist did not seem to really give much attention to the possibility of it being PNE/PN when I mentioned it. BTW, what do you all think about certain people on the web providing evidence against the existence of PNE/PN? For instance, I've read much about how these surgeries are sometimes unnecessary, and many times bringing no relief whatsoever.


I will be getting an MRI of the lumbar spine and thoracic spine. Any thoughts?


Thanks again

[HerMajesty]

Well PN and PNE definitely exist, the problem is overdiagnosis of PN as PNE. That leads to unnecessary surgeries. To explain: PN only means pudendal neuropathy. In other words, faulty conduction of signals through the pudendal nerve. of course it exists. Any peripheral nerve can experience faulty conduction. PNE, by contrast, stands for pudendal nerve entrapment and it is a rarer condition where the neuropathy occurs due to to the pudendal nerve being trapped in another structure such as scar tissue or between two ligaments. The surgeries are only necessary under certain conditions, when the nerve is entrapped in such a way that the only way to free it is to go in and dissect it out of whatever mess it is entrapped in. Even when necessary, the outcome of surgery is not always good because some people do better than others with direct manipulation of the nerves. Some will get issues like becoming re-entrapped in new scar tissue, and some will get well.
The unnecessary surgeries come when somebody has PN and assumes it is PNE. They see only specialists who are hypervigilant to locate PNE, and they jump into surgery in the absence of an explanation other than entrapment. I believe in doing thorough diagnostics to find the pathology before treating it.
Your symptoms are so global, I doubt strongly that you have PNE. In fact with the left sided issues and hand involvement, i would have made a brain scan and EEG a priority over the spinal MRI's. But both will probably be needed in the end so you may as well do them. And ask a radiologist to take a look at the existing pelvic MRI to rule out tatlov cysts - but from your description I doubt that is your problem either unless you have cysts in both the sacral and cervical spine. The hand involvement is too intense. Sacral tarlov cysts change CSF pressure and so they do cause some global symptoms (I had hand pain and vertigo), but it sounds more involved than that to me. It sounds like a central nervous system thing and not a pinched nerve somewhere.
As to the EMG, there are specialized electroconductive tests such as the PNMLT which can be done to check conduction in the pudendal nerve, but they are difficult to access and unpleasant to undergo. So I believe they ordered the lower extremity EMG now because it is a cheap, painless, easily accessible test to confirm neuropathy. It they do that and then go on to find a central problem in the spine or the brain, there is no use chasing the exotic pudendal tests. What you want to find is the source. In you the source sounds central, and until there is evidence to the contrary i think you would be a terrible candidate for PNE surgery.

[lucky]

update:


So I had the EMG done, and the doctor concluded that there must be something going on in the S1 L5 (?) I have no idea what he is trying to say, but I hope it means something not-pudendal related. Unfortunately, he could not figure out why I've lost sensation in my penis. He did mention, however, that my perineal pain could be the result of a herniated disk. Still a bit confused, but hopefully the MRI will clear things up. Still hoping this isn't anything to do with the pudendal nerve, seeing as I haven't encountered many success stories.

[HerMajesty]

The bony spinal column is divided into 4 areas for medical convenience: cervical (neck area), thoracic (chest area), lumbar (lower back), and sacrum (base of spine). L5 is the last vertebrae in the lumbar column, and S1 is the top of the sacrum, which meets with L5. there are nerve roots which run between the L5/S1 space, and it is a common point to get disc problems or other issues that compress those nerve roots. A problem at the base of your spine will account for neuropathy symptoms, so it makes some sense and will make more sense if the MRI shows an abnormality there. I still vote for the brain to be checked because the concentration of symptoms up the left side including the hand suggests more than a lumbosacral issue.

[lucky]

I've been doing some reading on Cauda Equina Syndrome. Any thoughts?


Also, if my EMG came out normal, for the most part, why would the doctor suggest something is wrong with S1 L5? Could he see something on the machine used for EMG? Or was he just speculating?


Considering my MRI is of thoracic and lumbar area, should I insist on getting MRI of sacrum?

[HerMajesty]

anything affecting the lower spine can cause cauda equina syndrome - type symptoms, because what happens above can compress the levels beneath. I think you have too much going on above the waist for cauda equina to be your only issue.
If the EMG was normal, of course the doc was just speculating...but are you sure it was normal? I would not expect it to be normal with the type of foot symptoms you have. TIP: insist on a copy of very since report (EMG, MRI, etc.) Keep the originals, read them, use google if necessary to learn the medicalese so that you can understand what you are reading. observe whether there are any abnormalities noted by the radiologist that are brushed off as unimportant by the physician. Also keep the original reports but make copies for every doctor you see. I also prefer to request and extra CD of the MRI to keep as a personal copy, in case a doctor want to look for things the Radiologist might have overlooked. Sometimes the CD's are free and sometimes they are $25 or $50, but worth having.
I think once you get all this testing done you will know a lot more, and not much use speculating ahead of time.

[lucky]

Thanks again, you're really helping clear things up.

I would like to mention that I've never-at least since I began noticing pain in perineum/frequent urination-experienced back pain.

Now I'm beginning to wonder. If the neurologist knows that problems in the sacrum could cause neuropathy, why would she order an MRI of the lumbar?

Also forgot to mention that the MD who conducted the EMG said that it could very well be a herniated disk, and that those things "heal with time". I personally think that's ludicrous! After suffering for such a long time, how could he tell me that this would just "go away"? Because of this, I'm begging to feel as though my problems with loss of sensation in foot and had are independent problems, and that perhaps I do have PN/PNE.

By the way, I forgot to mention that I had an MRI of my brain in 2011, well before my other symptoms (frequent urination, perineal pain) became so apparent. I'll bring a copy to neurologist next time I see her.


Should I just go to a pelvic floor/PN physical therapist? Is there anyway I can just have them see whether or not I in fact have PNE/PN?

Also, what are the classic PN/PNE symptoms?



Thanks again. Difficult to express immense gratitude behind computer screen.

[HerMajesty]

The only way you can really know for sure if there is pudendal nerve involvement is to get a pudendal EMG or PNMLT. There is a provider list for this specialized tests on the home page under "find a doctor".
A PT can tell you if you have pelvic floor dysfunction (hypertonic / shortened / spastic pelvic floor miscles) but cannot diagnose PN. I am not sure there is any reliable way to diagnose PNE although the 3T MRI's of the pelvis sometimes claim to be able to visualize an entrapment. Otherwise it is done more on the basis of history and symptoms and for that reason has potential to be overdiagnosed.
"classic" PN / PNE symptoms are probably viewable from the home page menu. they vary a lot person-to-person because the pudendal nerve has 3 main branches. Personally as a tarlov cyst disease patient, my symptoms were not "classic" so I am a bad person to get that info from.
The lumbar MRI was probably ordered because the sacrum can be viewed from the pelvic MRI.

[Violet M]

Lucky, you may be able to get some of your questions answered on the diagnosis and symptoms pages at pudendalhope.org.

I agree with HerMajesty that technically, PT's may not be allowed to label you with a diagnosis of pudendal neuralgia but in reality, the physicians I went to had no idea what was wrong with me. It was the physical therapist who knew about pudendal neuralgia and knew the pelvic floor better than the physicians who was able to finally pinpoint what my problem was. So I think it could definitely be worth your time to be evaluated by a good PN-aware PT. Many of them also work with the spine as well and may be able to determine if there are some mechanical or musculoskeletal abnormalities that are contributing to your problems. They can also evaluate the state of your pelvic floor. Dr. Hibner puts a lot of stock in what the PT he works with has to say when it comes to a diagnosis. My understanding is that he does not use the PNMLT to diagnose pudendal neuralgia which goes to show that the docs don't entirely agree on the best way to diagnose PN and PNE. The PNMLT measures the motor conduction of the nerve but not the sensory function. My PNMLT was normal on the side of my worst pain but I did indeed have pudendal neuralgia on that side.

Having a herniated disc on an MRI doesn't necessarily mean that the bulging disc is causing symptoms. Many people who are symptom free have herniated discs on their MRI's. So unless your symptoms correlate with the location of the bulging disc and what nerve roots are being compressed, having a herniated disc may not tell you anything about your diagnosis.

For sure your docs should rule out cauda equina. As I understand it, it often has a rather sudden and dramatic onset and is a medical emergency. Did they rule it out on your MRI?

Violet

[lucky]

So I've just come back from neurologist. The lumbar MRI came back negative. She referred me to a spine specialist to get his opinion, but otherwise, she cannot think of how else to help not where the source of my symptoms is coming from. Now I'm really worried. Every doctor I've been to has found nothing wrong with me. Find it hard to believe that what is causing my problems is the pudendal nerve, but that may be the case. I honestly do not think I can afford physical therapy, considering my insurance is pretty crappy and would not cover it. These are some dark days.