The Curious Tale of Morton’s Neuroma, Pt. II

Finally here it is, the second part of the tale about my bad foot.

If you haven’t read the first part, go here.

Today I want to talk about something that I find ultimately more interesting: the process of diagnosing a Morton’s neuroma. Morton’s neuroma is described by one podiatrist as a “perineural fibrosis, sort of a misplaced overgrown protective ‘scar’ tissue surrounding and compressing an otherwise normal nerve.”

Here’s the fascinating part of making the diagnosis, which really got my mind whirring when I fully realized the implications:

Morton’s neuroma is typically a diagnosis of exclusion.

So a podiatrist will check for multiple issues when the patient complains of ball-of-the-foot pain. Is there swelling? A bone fracture? A possible tear in the plantar plate? Etc., etc.

If nothing is found, many doctors will diagnose the problem as Morton’s neuroma. But it’s important to appreciate why: Probably not because there is definitely evidence of a neuroma, but because all other suspects were eliminated. So you may have capsulitis or some difficult-to-detect issue. But the diagnosis: Morton’s neuroma.

If this sounds familiar to a knee pain sufferer, there’s a reason. Patellofemoral pain syndrome is a similar kind of diagnosis, in a way. If your knee doesn’t have a clear structural problem, if an orthopedist can’t figure out what the issue is, you may be told you have patellofemoral pain syndrome. But notice my qualifying phrase “in a way” -- Morton’s neuroma is actually more dangerous as a catch-all diagnosis because it purports not to be one. In other words, it claims to know what the underlying problem is (unlike the infuriatingly vague “patellofemoral pain syndrome”).

My first diagnosis was made by a podiatrist using an ultrasound. He showed me the fat nerve and his diagnosis seemed like a slam dunk. There was the evidence, on a medical imaging device. Not until a year and a half later did I ask a general physician, “How can you tell the difference between a neuroma and a nerve that’s simply inflamed because you’re injured?” His reply to me:

You can’t.

Wow. That was a revelation.

If Morton’s neuroma is a diagnosis of exclusion for many podiatrists, it almost surely is overdiagnosed because of that alone. Further, here are five more reasons to believe it is overdiagnosed.

* Podiatrists, in reflective moments, are themselves wondering as much. Check out this long online discussion between foot doctors that was prompted by one’s question, “Am I overdiagnosing Morton’s neuroma?”

* Some aren’t even wondering: they’re pretty sure they know. Listen to this comment: “It has been my experience in 44 years of practice that this is the most overdiagnosed foot malady. In the years that I have been in practice I have found no more then 10 true neuromas.” Think about that -- that’s about one case every four and a half years.

* Follow the money: extracting a “neuroma” is a surgical procedure that probably pays well. Might this influence doctors, especially those trained to remove neuromas, to find more of these than otherwise?

* There are various comments online about about surgeons cutting open a foot to find a “no roma” or a very small neuroma, or about surgeries that fail to end the patient’s pain, or about neuromas that podiatrists say “grew back,” which doesn’t even make sense.

* Also you’ll find a number of people online who claim to have “healed” from their neuromas. This strikes me as implausible for a true neuroma. Once you have scar tissue hindering a nerve in your foot, I don’t see how it can just disappear, though of course you can take pressure off the nerve for temporary relief. But heal? If you healed, I’m betting you had some other issue.

As for what was wrong with my foot, I don’t know. I’ll probably never know. I did have a long period of the nerve being irritated, so it’s possible the nerve did change in some way. But I don’t think that was my main problem.

Anyway, the important thing is, thankfully I’m no longer contemplating neuroma surgery!

Update: The question was asked below how I healed my “neuroma.” I didn’t get into that originally, as this blog is “Saving My Knees,” not “Saving My Feet,” and most people who drop by aren’t that interested in foot pain issues.

But in brief, I did the following:
(1) Tried to avoid activities that stressed my foot.
This is kind of obvious, but worth mentioning. So, for instance, I tried not to stand around too long on the bad foot.
(2) Put better padding (Spenco insoles) in some of my shoes.
(3) Modified my cycling shoes and socks. This may have helped a fair bit. I cut a slit in the side of the right shoe, to relieve the pressure. Also I “faked up” a cycling sock. They tend to be tight, so I cut a comfortable white athletic sock off at the low ankle to make it look like a cycling sock.
(4) Modified my other walking shoes. I actually cut holes out of the side of them at first (to copy someone on the Internet who did this). But then I realized – d’oh – all you have to do is cut a slit in the side; it accomplishes the same thing without looking so ugly.
(5) Modified my dress socks. I actually stretched them out overnight on the end posts of exercise equipment so they wouldn’t be so tight.
(6) Bought new footwear. This, I think,  was important. I bought some Altra Instinct 2 Zero Drop sneakers to walk to work in (very wide toe box, great cushioning, and zero drop too of course) and to wear on weekends. Also bought some Crocs. Fell in love with the Altras; they are superb.

I also used Hapad pads for a while, but toward the end (the period when real healing took off), I wasn’t using them, as they got hard to position exactly right and tended to annoy my foot.

Knee Pain and the Ghost in the Machine

I’m going to delay part two of the Morton’s neuroma thriller just once more, which I imagine no one will protest, as I’ve received no comments specifically on the issue of neuromas.

I want to go back to last week’s subject, because TriAgain made an important comment.

First, I have a fear sometimes of becoming facile, of lapsing into can-do boosterism and tired platitudes (“Just move! You just need to move!”). That’s one reason that I liked last week’s subject, on breakdown points, because I remember doing some hard, original thinking for the first post, a few years ago.

However.

What TriAgain put his finger on (“there may also be other systemic problems”) was a really difficult, intriguing piece that I honestly don’t have much of a clue about (and neither do your doctors, I suspect). Yes, there are breakdown points, and when you lurch beyond one, you can suddenly go from the blissful absence of any pain whatsoever to a nagging injury that just gets worse and worse.

But once you’re on the wrong side of no pain/pain, is it simply a matter of fixing an overstressed structural component (cartilage or whatever) to return to a previous healthful, pain-free state?

Maybe not. As anyone who read my book knows, I turned into a bit of a mess. At one point, it wasn’t just my knees but tendinitis in both forearms, along with terrible back pain. Happily, once I conquered the knee issue, I also managed to get on top of the other problems. So I did succeed in crossing the no pain/pain divide in the right direction.

But what exactly were those other problems? Were they related? And, if they were, perhaps once some malevolent systemic genie has been released from its cave, it can be really hard to get that thing quieted down and back inside again.

I know TriAgain suspects that complex regional pain syndrome is at least partly to blame for what his knee pain has morphed into. After checking out the CRPS symptoms, I can say that most of them don’t align with what I had.

But still.

When I had the chronic knee pain inflammation/irritation, I started to get the feeling that I was chasing a poltergeist that was loose in a many-roomed house. If my knees felt a little better on a particular day, some other joint would feel a little worse. Very weird, I thought. So I asked my general physician if all the joint pain could be related, and he assured me “no,” with this look as if he were humoring a naive child.

But the more I read everyone’s stories here, the more I am convinced that there is very often something systemic that slips in through the back door with chronic knee pain. It isn’t there at first. And it isn’t there for everyone. But I almost get goose pimples on my arms on reading all these accounts of knee pain sufferers who thought they too had rheumatoid arthritis.

So sometimes, when I’m rattling off my thoughts on healing and feeling a bit facile (in that way you can be when your chronic pain recedes to a distant memory), I get a little jerk-back to reality and sense of humility on realizing there’s a whole lot I never did understand. Like whatever that systemic issue was.

With knee pain, I believe there can be a kind of ghost in the machine, a nasty something rattling around inside you, wreaking havoc. But how that thing works, I really don’t know. Hopefully, in the years to come, someone in the medical field will discover some answers to the questions we have about that systemic part, and I can report back the findings.