The great foot collapse

Posted on January 24, 2019 | Leave a comment

The pain in my feet and ankles has gotten severely worse over the last few months. I finally got to a podiatrist and got some answers. Due to the unusual structure of my lower legs and ankles, I have always naturally stood and walked with my feet pointing outward at about a 70º angle. Years of doing that, and trying not to do that by forcing my feet to point more forward while walking, have led to increasing stress on my feet until finally, a while back, a series of problems erupted.

My arches now collapse while I walk, causing my ankle to slide inward from the heel of my foot, so that I not only walk flat-footed, but my ankle is not centered over my heel, and my heel is actually twisted so that I’m almost walking on the side of my heel instead of the sole of my foot. The result is enormous stress on my ankles and lower legs.

This also causes my toes—especially my inner toes (the big toes and the one or two next to them)—to lose contact with the ground or the insole of my shoe while I walk, so my feet naturally began to curl my toes under so that they made contact with the floor while walking, since the toes play a crucial role in balance and stride.

But curled under like that, the part of my toes that make contact with the floor aren’t the bottoms like they should be. Instead, the tips of my toes, including the nails, are being pushed into the floor with every step. This causes strain on my metatarsals and the tendons in my feet.

It also means that my toenails and the skin at the tips of my toes are essentially becoming one big callus. It’s hard to see where one ends and the other begins. It’s pretty weird looking.

This may also be damaging nerves in my feet and ankles. And that’s where things get real. Who knows how much permanent harm has been done by all this?

The podiatrist and I are working to gradually increase support under my feet to try to mitigate things and keep my feet from sliding off-center on my heel so much, to try to get my toes back to the floor the way they belong. With luck we will at least reduce the amount of pain I’m in, as well as the various visible problems with my toes themselves.

I’m frustrated that nobody figured this out sooner; it’s not like I haven’t specifically asked my doctors if the unusual structure of my feet and the way I walk might be a problem. Sigh…

Leave a comment

Posted in Diagnoses, Doctors, History, Pain, Personal, Rants

Tagged , , , , , , ,

Testing… testing…

Posted on October 7, 2018 | Leave a comment

I talked, in my previous post, about how my last appointment with the neurosurgeon didn’t go as well as expected, and that they were going to have me get a lumbar block of the nerve that handles sensation from my lower back down through the back of my right leg, then making its way around to the top of my foot. I was told I’d be called when that was scheduled, and that it would be my pain management doctor handling that.

I got the call! On October 31, they’ll be doing a nerve block in my spine using some agent that will briefly numb one of my nerve roots at the very base of my spine. If doing so causes relief in my pain in my lower back and down into my leg, that means I’m a candidate for surgery to at least—in theory—reduce or eliminate pain down the right side of my body from the waist down.

So… on Halloween, I should find out if there’s any hope that surgery might help with any of my pain. If so, we’ll schedule something—who knows how far out that will be—and see how it goes. Even if it does exactly what the doctor hopes it would do, it won’t resolve all my problems. Not even a majority of them. But at this point, any improvement is a victory. I haven’t had many victories over the years of dealing with this neurological nonsense goi8ng on with me.

Trying hard, again, not to work up too much hope and excitement. Each failed procedure or medicine change is a knife to the heart, emotionally speaking, unless I manage to convince myself the new procedure or treatment isn’t likely to work out.

I sure hope it works*

* See? Hard not to get my hopes up.

Leave a comment

Posted in Diagnoses, Doctors, Meds, Pain

Disappointed Again

Posted on September 28, 2018 | Leave a comment

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.

Leave a comment

Posted in Diagnoses, Doctors, Pain

A New Hope…

Posted on September 13, 2018 | Leave a comment

The last few months, I’ve gradually developed lower back pain and other symptoms that suggested that it was time to revisit my neurosurgeon. Yesterday I finally had my appointment with him. I did not actually wind up seeing him; what was discussed during my pre-meeting with the physician’s assistant made it unnecessary.

Unfortunately they did not have (and I couldn’t find) a copy of my latest MRI. I will be going today to get that to bring to my next appointment—which will be next week! Based on my symptoms and what test data they do have, they think it sounds like I need some surgery to relieve pressure on nerves in my lower back.

The specific areas where the back issues seem to be correspond directly to the nerves that run to the parts of my legs and feet that hurt the most. In other words, assuming the MRI I pick up today and bring in next week says what they think it’s likely to say, I’ll meet with the surgeon and we will start planning a procedure. It could be just a removal of bone growth that’s pressing on nerves or a full-on fusion procedure. The latter, they say, would likely take “up to a year” to recover from fully. We’ll know soon what we want to do…

I’m excited that there is again something that might work. I am trying to contain my enthusiasm because when I get too enthusiastic about this kind of thing, it fails and I wind up depressed…

Leave a comment

Posted in Doctors, Pain

The Beginning

Posted on July 10, 2018 | Leave a comment

Welcome! This is the first post on Neurillogical, my blog about my unpredictable, painful, and so far generally undiagnosed neurological issues. I started this blog to have a place to write down my experiences and feelings, but also to vent, and to share my story with others that might have similar issues.

My pain started in my legs at first, way back in 2000 or 2001. I don’t really remember for sure. It sort of snuck up on me, gradually worsening until I finally was in so much pain at night trying to sleep that I had to see my doctor. Back then, the pain was worst while lying down. My legs would feel like ants were swarming among the fibers of my muscles, and I gradually started to have more and more trouble sleeping as the pain worsened. I haven’t had a solid night of sleep since before this.

I moved to Tennessee with my wife (from California) in 2002, and my first appointment with my primary care physician is recorded in my medical records. The very first sentence is something to the effect of “Patient complains of frequent severe leg pain.” A “just to give it a name” diagnosis of fibromyalgia was applied.

In 2010 or 2011, I suddenly developed terrible, sharp pain that felt like it was deep inside my left ear. After ruling out ear infection, orthodontic problems, migraine, and a number of other issues, the diagnosis was finally trigeminal neuralgia. Not long after that, the pain migrated down into the left side of my neck, and it stayed there for a very long time, despite having a discectomy to correct a minor nerve root compression problem.

Things continued to slowly, steadily worsen. I developed tremors in my arms, and sometimes I would have spasms that would cause an arm, or a leg, or sometimes even my entire body to lurch. At times, I would be working at my desk, using my mouse, and would uncontrollably lift the mouse from my mousepad and slam it back down again.

Then the electric shock sensations started. The feeling that I was being blasted by electric current randomly around my body. Mostly in my arms, sometimes in my legs or face. Those continued to worsen, along with the spasms and uncontrolled movements.

After that came the numbness and tingling. I can no longer feel many of my toes at all, and the entire area below the knee is always numb at best, with some areas extremely so. Everything from my lower back down to there is at least in pins-and-needles territory most of the time, and sometimes it’s even worse.

More and more symptoms crop up, and more and more specialists are stumped. It’s crazy.

We have never successfully diagnosed my condition. It keeps changing, and it is definitely steadily worsening. The pain moves around my body, sometimes in my legs, sometimes in my neck and shoulders, sometimes in my face.

I’m miserable from the pain a lot of the time. I do my best to fake otherwise though, because I don’t want my daughter to know just how bad it is. She’s aware I have pain problems, and that as far as we know they don’t mean anything serious is wrong beside nerves acting out of line, but she doesn’t really know just how much of the time I feel it, and just how bad it is.

My wife and daughter give me a reason to keep fighting for answers.

Anyway, that’s a quick overview. I’ll be talking about various specific incidents, issues, and problems over time in future posts.

Leave a comment

Posted in Chitchat, Diagnoses, Doctors, Family, History, Pain, Personal