Wednesday (September 26) was my follow-up appointment with my neurosurgeon’s office, at which we were to review the MRI from the spring as well as a couple of new X-rays to see if there’s evidence that a surgery could help reduce or eliminate symptoms. The signs were positive going in — the preliminary information about possible nerve impact from the compressed nerves at the base of my spine corresponded nicely to the areas where I hurt in addition to many of my other symptoms.
Unfortunately, after reviewing the pictures, the doctor feels that while the placement of the problems does correspond to my symptoms (each place where there’s added bone growth or compression aligns with one or more of my pain areas, or with nerves responsible for other things I’m having issues with), the fact that my pain is present in both legs despite the images showing that the nerve compression seems to only be an issue on the right side makes it difficult to be confident that the nerve compression is in fact the cause of my symptoms, especially since the compression isn’t severe.
So basically: no surgery, at least not for now.
I’m pretty heartbroken by this. We were all pretty sure the scans would back up the idea of a possible surgical fix for at least much of my trouble. And as much as I tried not to get my hopes up, I still really felt like this time, maybe, we were on track to possibly alleviating some of my symptoms.
Instead, we’re left back where we were before: no ideas. No prospects for treatment. Symptoms continuing to get steadily worse:
- My average pain level is slowly getting higher and higher.
- I’m having pain “spikes” more and more often, and of greater intensity.
- Pain spikes are occurring in new parts of my body all the time.
- The loss of sensation is worsening. The problem is now bad enough that sometimes when I lift my feet from the floor in order to move them, I can’t feel that I’ve moved my foot. It feels, for a moment, terrifyingly as if my foot has become stuck to the floor, or like my shoelaces are tied together or something.
- The loss of sensation continues to steadily spread upward through my body. The worst areas are still “at the bottom,” in my toes and feet, but the numb, tingling feeling now extends up to my waist or slightly above that point. If the compression issues are causing the numbness, in theory the advancing numbness should stop where it is now, since it’s reached that part of my body.
- The reduced ability to feel pressure, movement, and so forth isn’t just muscular; I am experiencing the effects of having reduced sensation internally as well. These effects are… weird, to say the least.
- The swelling in my legs and feet is pretty severe now; my skin is stretched tight in my calves from it, with capillaries bursting in places from the strain.
I’m pretty fed up with this. It’s now over 15 years since I first went to the doctor about pain in my legs, and we have yet even get a fully believable diagnosis, let alone a treatment plan that works. I am in the process of looking for a referral for a new neurologist. Someone who will actually really dive in and hunt for the problem. I can’t feel like we’re really going after this issue when we only meet every six months to a year even if an appointment amounts to “the tests don’t show anything, we’ll try something else next time.”
Don’t make me wait! Let’s roll into the next test! Hell, check me into a hospital and test me until I pass out if that’s what it takes. I want answers! I want—I need—some kind of real plan.