I had a C3/C4 fusion done in 2004. Six months after the fusion I developed burning sensations in my hands and feet. My Neurologist thoroughly tested me as well as Athena Diagnostics, not once but twice. Every test came back negative so I was diagnosed with idiopathic small fiber PN. I tried Neurontin, Cymbalta, Depakote, Lyrica, Topomax and Xanax. The ONLY thing that seemed to help was Klonopin of which I take .05 once a day. Now, at the same time as my fusion the C5/C6 was bad (encroaching on the spinal cord) but my Neurosurgeon did not want to do a fusion until he saw how well the C3/C4 took. Now it is time to get the C5/C6 done and I am VERY worried! I am afraid the PN will worsen and it seems it already has. Also, my lumbar area is also giving me fits at the L5/S1 and while I don't feel too much pain in my back and legs, I do have a LOT of pain and burning in my ankles. I do not want to "up" the Klonopin at this point. My Neurologist says that the neuropathy is INDEPENDENT of the fusion. I just can't buy into this because when my neck and back go into a flare is when the PN increases in intensity. Could this PN be a compressive sort and/or radiculopathy? And could facet degeneration at L5/S1 cause pain or burning in the ankles? Oh, and I have received one ESI for the lumbar and selective nerve root injections for my neck. Thanks so much for any advice or input!
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
There is more than one possible cause for the symptoms you decribe, but the etiology of the pain can be determined with tests (not just blood tests, ie: Athena).
When the spinal cord is compressed, as you describe at C5/C6, it can cause pain fibers in the spinal cord to misfire and cause a variety of sensations including burning pain. Another common feature of cervical spinal cord compression/irritation is a feeling of sparks going down your spine when you flex your neck. If this is the case, a SSEP (somatosensory evoked potential-this tests the "wiring" form your leg to your brain). will be abnormal.
Another possible cause of your burning feet pain is an idiopathic (unknown cause) peripheral neuropathy (PN) (despite advances at least 30% of PNs have an unknown cause). An EMG would be helpful to evaluate the large myelinated fibers of the leg to assess for signs of demyelination and/or conduction block. If this is negative, then the neuropathy may be "small fiber" and can be diagnosed by QSART (quantitative sudomotor axonal reflex test) and/or by skin biopsy to examine the small nerve fibers in the skin at 3 small area going up your leg.
The third possibility would be a L5/S1 radiculopathy. This is less likely though, given that your symptoms are on both sides. The EMG previously mentioned would also evaluate for this possibility.
There is very little that can be done for a truly idiopathic small fiber neuropathy except for treating the symptoms with neuropathic pain medication (which you have tried many). A surgery would not make an idiopathic PN worse. Since you have known spinal cord compression in your cervical spine, I would recommend that you have this fixed (with or without an SSEP first) and see if your symptoms improve (I think they will). If not, your PN will be unchanged and you can focus on the tests I mentioned and further symptomatic treatment. I hope this has been helpful.
Thank you so much! You have relieved my mind a great deal. I forgot to mention, however, that I did have two EMGs and one QSART. The latter is the test that showed I had small fiber PN. But my Neurologist also told me it was so minute that it practically didn't show up on the charts. So, I tend to agree with you that this may be because of the C5/C6 and/or lumbar radiculopathy. I don't have the "sparks" that you speak of. I simply have the typical C5/C6 radiating pain across my shoulders, in between the shoulder blades and down into my thumb and first two fingers. As far as the lumbar goes L3/L4/L5 and S1 are all lying on a long nerve root (not sure what nerve it is exactly) but I have been told my neck is much worse than my back. So, if I am understanding you correctly, then anything going on in the neck can travel down to the toes, etc. I am having the C5/C6 ACDF in September and this is after having at least 3 sets of selective nerve root injections. So, it is time. I am so hoping that this is what is causing the burning sensations! I know that sounds odd but I would rather believe it is the C5/C6 then some autoimmune condition that they can't seem to find (everything comes back negative). I am also glad to know that the PN should not worsen. Thank you so much again for your response. :)
Just wanted to give an update. I went to see my Neurologist today and I guess because I am so fed up with my constellation of symptoms, that I took my cervical and lumbar MRI reports with me (recent ones). See, awhile back she said to be careful with having another fusion as I might end up a surgical cripple. That statement scared me so bad! So, she apologized profusely and said what she meant to say was that sometimes one surgery just leads to another which tends to happen with fusions. Anyway, I had a ton of questions for her and she totally agrees that something has to be done with the C5/C6 (ACDF). I just wanted to point out to her that it is compressing the spinal cord. She also made me feel much better and pretty much said the same thing you did...that fixing this problem may help the small fiber PN get better. And I wanted to get a better understanding of how the peripheral nervous system works. She went through all of that with me. She also went over all my bloodwork (testing) and says again that nothing was found. My Rheumatologist? Same thing! Anyway, she wants me to make an appointment with her after I recover from surgery. In addition, we discussed Klonopin since I take .5 a day. I was concerned because my NS usually prescribes Vicodin and Valium for short term. She told me if I wanted to, I could taper the Klonopin down to just prior to surgery and then go with the Valium. Klonopin is great for the small fiber PN but I don't think it works as well for muscle spasms as Valium does. And I know those spasms will be coming. But I guess either way I could stay on one or the other but I think I would prefer the Valium after surgery. What are your thoughts? Thanks!
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