I am a female in my late thirties. I had spine surgery 10 months ago after several years of lower back and leg pain. The pain in the back and right leg had been intermittent for 10+ years. I then had a sudden onset of pain that never completely resolved with PT, steriods, epidural injections, etc for 14 months. MRIs revealed significant degeneration at the L5/S1 level and degeneration and a herniated disc at the L4/5 level. The pain escalated and a right foot drop developed. It was found that in addition to a herniated disc, I had lateral recess stenosis resulting in the L5 nerve root being severly battered and black in color. Both the disc and lateral rescess were decompressed and a flexible fusion system installed.
I have been doing e-stim on the leg multiple times a day and have seen some improvement in foot eversion but little improvement in dorsiflexion. Until recently, I had not been correctly performing all of the stim. I had missed the peroneus longus muscle. The tib anterior strength has been rated at a 5/5 with the peroneuous longus and EHL at a 2+/3- over 5. Even though I have some movement back and almost normal sension, the muscles are still weak.
I asked to have an nerve studay and EMG performed to assess the progress (these tests were never performed in the past). The test identified a secondary peroneal neuropathy in the leg showing an active, significant denervation process of the tibialis anterior. A regular MRI from the knee down showed muscle atrophy and denervation signals in many muscles of the lower right leg.
All blood tests have come back normal with the exception of the RDW-CV which was 10.2 (not sure what this means). The neurologist I was referred to believes I have Charcot-Marie-Tooth disease due to the abnormal nerve signal, loss of muscle mass and high arched feet. He said insurance would likely not cover genetic testing so he did not even try to get it approved. I have no family history of the disease and no past history of muscle weakness, clumbsiness, etc. I have had several EMGs and nerve tests at this point and the left leg is completely normal.
I have been told it is hard to tell for sure what is going on and if the secondary issue is contributing to the foot drop. I was also told that I could have a follow up appointment in six months to a year if I wanted to, but we would likely just have to wait to see what develops to get a true diagnosis. I am not comfortable just waiting to see what progresses for several reasons, among them knowing that there is a 50% chance of passing CMT on to any children I have and the possiblity there is another cause of the neuropathy that will go untreated while we wait.
Is is normal to only have abnormal nerve signal with CMT in only one leg? Do standard MRIs show nerves well enough to completely eliminate the possibilty of a double crush nerve injury? Also, the hospital who performed the MRI did the wrong MRI the first time. They did a standard knee MRI and then called me back to scan the leg below the knee. Does a standard knee MRI cover an area high enough to capture the entire nerve? My primary physician recommened asking if there is a possiblity if a tumor or cyst above the knee could impinge the nerve and cause the abnormalities.
At this point I have many questions and do not feel I am getting answers. I am asking for a referal to another medical center, but it will likely take weeks to get in.
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