Cost & wait time of getting MRN in the US?

[volans]

Hey guys, Canadian here. After 2.5 years of having this terrible pain (which appears to be nerve related, although who knows if it's the PN specifically) I've been in touch with a pain clinic that will hopefully give me some form of MRI. Even though I began the referral process in December, they said today that I still wouldn't be able to see a doctor for another 7 MONTHS; Canada has very long wait times for specialized doctors. At this point my pain is so bad that I can't sit, stand, or lie on my back. I normally just lie on my side all day but the nerve has become so sensitive that even that is becoming unbearable. It's very hard to get to sleep and I usually only achieve around 4-5 hours of sleep. Anyways enough of my background, here is the question:

Do you think it would be worthwhile going down to the states to get an MRN done? I've entertained all the other routes (colorectal surgeons, pelvic floor therapists, etc.) I'm just wondering what the costs and wait times would be like for someone without health insurance.

[Violet M]

An 3T MRI/MRN isn't necessarily accurate in the diagnosis of PN/PNE so I can't say for sure if it would be worth it. Sometimes they provide valuable information. It is important to rule out possible tumors or other impingements if you haven't already. My guess is you could get an MRI/MRN within weeks based on my own experience with MRI's in the US but I could be wrong. I can't say for sure on the cost because it would depend on what all they image but based on my own experience, MRI's cost several thousand $. It would depend on where in the country you get it done. Is there any way you can get the Canadian Health Service to pay for it in the US? We've had Canadian patients post before that they were able to get some things paid for in the US.

What diagnostics have you had so far? I see you have been to PT which is an important step in the process, especially PT from someone who is trained in treating people with pudendal neuralgia. Sometimes your history can determine what diagnostic tests and treatments are the best to pursue. For instance if your pain developed as a result of lyme disease you would probably want to pursue different options than if your developed pain as a result of heavy exercise.

Violet

[stephanies]

I agree with Violet-- an MRI or MRN is not typically able to accurately diagnose PN issues. Do you have access to medication as well as PT at this time? Can your PT give any info on if your pain seems to be coming from your PN? If not, you may want to wait (although it stinks) to avoid paying out of pocket for the MRI as well as your travel expenses.

Stephanies

[volans]

I've had a CT scan of my pelvic region for sure, and I believe they also examined my lower back. I also had an xray that checked my coccyx for any damage and that came up clear. As for the pelvic physiotherapist, I had 8 sessions with no real help or diagnosis. After the 8th appointment she recommended that I stop seeing her because she couldn't find anything wrong with me and I was basically throwing my money away.

I should also mention about 8 years ago I had what might have been an anal abscess that I never had properly checked. For months it felt like I was sitting on a golf ball until one day the pain went away and (TRIGGER WARNING: gross detail) yellow puss was draining out of my rear. Some infection clearly popped and the pus was the result or that. I was traveling at the time so I couldn't see a doctor, and since the pain went away I foolishly considered the problem resolved and never brought it up with my GP. Whether that could still play a role in my pain to this day I'm unsure, but if there was a lingering abscess/fistula the CT scan should have picked up something.

I feel like i've exhausted all other possibilities. Right now my pain area (tailbone/rectal region) is so sensitive that I have to be careful how I shift my pelvic region, because i'll get sharp jolts of pain if I twist or shift my hips in a certain direction, or if I bend over to pick something up, or if I sneeze too hard. 10-20 minutes prior to having a bowel movement i'll get a sharp pain that will knock me to the ground; it feels as if the stool eventually presses against a sensitive nerve that triggers this quick pain, because it always occurs around the same time. Also If I simply press or manipulate the skin surrounding my tailbone it triggers more pain.

If it's not a nerve issue, I don't know what else would be causing this type of pain.

[Violet M]

Well, whatever it is, Volans, it sounds very painful. I'm sorry to hear PT did not help you. Did they do myofascial release via the rectal area and were your pelvic floor muscles tense at the time?

Violet

[volans]

Well, whatever it is, Volans, it sounds very painful. I'm sorry to hear PT did not help you. Did they do myofascial release via the rectal area and were your pelvic floor muscles tense at the time?

She did myofascial release but it didn't help. She also said the pelvic floor muscles didn't seem all that tight, at least not tight enough to explain the kind of pain I was in. The only thing she found odd is that my sphincter muscles were almost non-responsive, like i had lost typical motor function of that area. She would insert a finger and tell me to contract the sphincter as best as I could and I could barely do it.

[Violet M]

You would think that if you had lost sphincter control that you would be having incontinence. Have you tried a ganglion impar block for the tailbone pain? You could check out coccyx.org.

Violet

[volans]

You would think that if you had lost sphincter control that you would be having incontinence.

I have the opposite problem which is that the sphincter doesn't know how to relax and empty the bowels. I even have trouble passing gas, which should be easy.

[Violet M]

So the sphincter won't relax but your PT said the muscles aren't tight or in spasm? I'm not sure what to make of that but I'm sure it must be very frustrating for you. Maybe you could try some type of rectal suppositories or muscle relaxants like valium.

Violet

[jaxi123]

My MRI in 2011 with dr potter was $4500