Sciatic Pain... Mri Is Pretty Normal

[janiedelite]

I posted a few months ago about my left hip/leg/lower back pain that's really flared in the last 6 months. I was in a bad car accident 4 years ago and had 2 left hip arthroscopies over a couple of years, 100 PT visits, and limped during that entire time too.

Now the pain is a generalized ache in my left leg, hip and lower back. But I also have specific aching to burning to stabbing pain that follows my S1 nerve (sciatic) down to my feet. Intermittently I've also started having patchy periods of coldness and feeling like my legs are wet but they aren't. I was diagnosed with small fiber neuropathy 18 months ago at Mayo because of the burning in my feet, hands and face since POTS started.

My first stop was my hip surgeon who was convinced my hip wasn't the problem.

So PT didn't help, and my PCP recommended a physiatrist. This guy had the worst bedside manner of any other doc I've ever seen (and I've seen more than my share ). BUT if he knew his stuff, that's fine because I just want the pain to stop. I had an MRI that showed questionable S1 nerve root compression (not a new finding), so I had an epidural injection that didn't provide much relief. So I had my hubby go to the following appt with me to the physiatrist, and the guy says there's nothing more he can do for me. He's the head of the entire physical medicine dept at 4-5 hospitals, and this is all he has to offer and that he thinks much of this pain is the small fiber neuropathy. He tells me to go see a back surgeon (which I did, and he performed a hour-long exam and said he found no need for surgery and saw no sciatic nerve compression on the MRI).

So I'm doing the best that I can to live with this pain. Maybe it is just dysautonomia related. I think at least some of this is related to the hip injury from the car accident. If I'm still hurting like this in October when our insurance changes, I'm going to a well-known physiatrist at another hospital. This other hospital also has a QSART, so they can check to see if the small fiber stuff progressed (my first QSART was negative, I was diagnosed based on symptoms/sensory testing).

I know there is a definite nerve component to this lower body pain. Maybe it's just some mild residual injury or scar tissue, and my hypersensitive body is overreacting. Maybe it's small fiber neuropathy. It's just frustrating when by the end of the day, I'm so grumpy with pain and I don't even know what's really causing it. It's not excruciating pain, and averages 3-4/10, but today is back up to a 5 out of 10. Still, I'm trying to just learn to cope with this pain and assume I'm going to have to live with it.

Thankful is trying really hard to be thankful right now...

[comfortzone]

Do not whatever you do give up on finding the source and all possible healing modalities for that group of symptoms.... I'm very skeptical of that Physical Medicine and Rehab doc's assessment based on what you wrote. PM&R docs most often go into a Pain Medicine practice and love to do those pricey modalities like epidurals etc...and rarely do I find them doing anything at all with true Rehab type stuff....they leave that to the PT's. A few add to their practice the perfomance of diagnostics such as EMG's. But what you describe is not only of that specialty to my way of thinking. It just seems like some piece is missing. Have you had an orthopedic surgeon review your case and records very recently? It would be good to collect the records you have in orderly fashion and perhaps go to someone really known for their expertise look at the bigger picture once again - even though you did see a back surgeon. Maybe at a different major university center or another tertiary care center. Has neurology ever entertained the notion of Complex Regional Pain Syndrome or something of that nature since your original injury was traumatic? There are good articles on the web about it and maybe this is what's going on since your accident? What is a QSART test btw? I recently had a skin biopsy that took superficial tissue from 2 spots - ankle and thigh - that was sent for staining and diagnosis of the nerve fibers...is that what you had done for the small fiber neuropathy? It doesn't seem to me that your major symptoms (like of large fiber neuropathy) would be caused by the small fiber stuff. Have you had EMG's done of at least that affected leg up into the lower back? That would show nerve damage of S1 origin.... Did the MRI done use contrast? Anyway - I sort of get the idea that you are getting close to your answer and need to not give up -- someone much smarter than me that's a doc will hopefully nail this for you - and soon. You deserve the best quality of life possible...... blessings your way.

[janiedelite]

Thanks for your reply! Here's answers to your questions:

- I saw my hip surgeon this past spring, but I have some doubts about how thorough he was in examining me.

- I haven't had an EMG since Mayo 18 months ago and the report said I was normal, although the doc who performed the test spent over an hour testing the muscle on the outer calf area (which is innervated by S1) and didn't feel it was normal. But he was a resident and his supervisor said that he believed it was normal.

- I had a skin biopsy from 3/08 that was used to look at my small fiber nerves in 2/09. They said it was normal.

- QSART tests to see if you have sudomotor neuropathy (sweat glands don't work), which is a good indicator of small fiber neuropathy.

- I agree that the physiatrist should have looked closer at the cause of my large fiber neuropathy. I will go to my state's local research hospital once we change health insurers in a couple months to a physiatrist there who was recommended by my hip surgeon.

- The MRI didn't use contrast.

[sue1234]

I want to throw in my little odd story of sciatic-like pain.

10 years ago I would get this pain down the back of my legs, and it got worse every month, then eased, then got worse, and eased. Back and forth. I let this go on for a year, and noticed this "monthly" cycle of increasing pain. I somehow knew it was gyn-related, so went to my gyn first. He did an ultrasound that showed I had a lemon-sized, bad-marker looking cyst on one ovary. So out it came a week later. Come to find out, both my ovaries had "slipped" behind my uterus years earlier and with my ovulation every month, the growing follicular cyst would cause extra compression on my nerve roots.

This is probably not your problem, but I always make sure I let any further readers know that on very rare occasions, it is something gyn related.

[Ashelton80]

Have you seeked the help of a chiropractor? If not, I would really encourage you to do so.

[janiedelite]

Yes, I was going weekly for several months. Then I went to massage therapy. Neither helped.