Everybody's Nerves are Different... "The Story of the Unexpected Nerve"

I like math.  1 + 1 = 2.  Always.  The teacher can't be too biased in grading this problem.  1 + 1 = 2. Period.

Medical students have it rough.  There are few absolutes for them.  There are 206 bones in the human body, right?  At some point, maybe in seventh grade, they told you that.  But is that true?  As for me, I have 208, as far as I know.  A few extra bones in my feet.  And this medicine will work for patient A, but not for patient B.

Going out on a limb,  I am going to say that muscles are probably similar from person to person.  Slightly different points of attachment, perhaps, but not too much variation.  (You medical people, feel free to chime in and correct me.)  From even my experiences, though, the nervous system can be markedly different from person to person.

Just for fun, look up "cutaneous innervation."  Click on your favorite picture.  You will see that some tattoo artist went crazy with a paint-by-number theme on a hapless victim.  Not really -- it just seems that way.  Each color represents an area of skin that is "serviced" by a particular nerve.  There are lots of nerve names.

We will look at the foot, my area of interest.  Specifically, the bottom of the foot.  This area is serviced by nerves called plantar nerves.  (Just like "plantar" warts are those on the bottom of the foot.  "Plantar" just refers to the bottom of the feet.)  Now, there are two main plantar nerves.  There is the lateral plantar nerve (orange innervation below), which services most of the bottom your foot along the pinky toe edge.  And there is the medial plantar nerve (blue innervation below, which services most of the bottom of your foot along the big toe side.  There are other nerves that service the white area, but I will ignore those for now.

Nerves branch, like a tree, until the smallest branches "stick" in your skin and send messages about touch, temperature, pain, etc.  And anatomy people like to name the big branches.  So, they name the branches found in most people.  For the foot, MOST cadavers studied in medical school have one main branch between each set of toes ("common digital nerves"), and then some lonely branches that just get half a toe (one side of the big toe, one side of the pinky -- "proper digital nerves."  They must be British.).  So, the lateral plantar nerve (orange) sends out one main branch to the outside of the pinky, and then one between the fourth and fifth toe (drawn in yellow, below).  The medial plantar nerve gets three common branches, and one proper (draw in red, below).  Feast your eyes on the beauty of digital artwork.

That is one way to do it.  Nature creatively has another way is to innervate that third "web space" (between toes 3 and 4) with a branch from the lateral plantar nerve and one from the medial.  They join to form a mutt nerve (this is term not found in medical textbooks, I'd wager -- green in my picture) like so:

That's lovely.  Well, when my patient's nerve got crushed, they took out that lovely green nerve there, and then we found out the skin really hadn't lost feeling, and there was still excruciating burning.  The anatomy charts totally failed us.  When we finally found the source of the original injury, it was something like the purple line on the picture below:

It was... THE UNEXPECTED NERVE.  An "extra" branch in that third webspace.  We are not sure where it originates.  The surgeon said it went medial (toward the center of the body), so it maybe came from the medial plantar nerve?

Anyway, I want to spread the word in case it saves years of someone else's life:  Nerves Are Different From Person To Person.  In a different post, I will cover that even the nerve bundles exiting the spine differ.  In peripheral nerves, there are crazy "communicating branches" that meld with other nerves.  Nerves branch at different places depending on the person.  Before they enter the tarsal tunnel.  After.  More main branches in one person, fewer in another.  I have heard that in the pubic area especially, there is extreme variation in which nerve innervates which area.  (All this makes me curious about the variation in muscle innervation, but I have not researched this area at all.)

I like math. 1 + 1 = 2.  This nerve mapping is called probability and statistics.  I hope they teach that in medical school, so they can find the next patient's "unexpected nerve."

Traditional Morton's Neuroma surgery? We don't recommend that, sir.

Are you considering Morton's Neuroma surgery?  Are you reading every possibly firsthand experience, after all the online clinical information starts to sound suspiciously the same?

From personal experience as the support person of a person suffering from foot neuromas, I beg of you to consider radiofrequency ablation (RFA) first.  Even twice or three times, if the first one doesn't work out.

I am a big advocate of Dr. Stephen Barrett, a podiatrist who practices in Arizona.  I have never met the man, but the only doctor who has been able to help my "patient" learned RFA technique from Dr. Barrett.  Dr. Barrett also has a number of well-written, persuasive articles on this topic.  The links are below, and I will quote from them.

My understanding is that Morton's Neuroma is a thickening of tissue around a nerve (I am still not clear which tissue does the thickening) when the nerve is irritated, usually by compression from the bones around the nerves at the ball-of-foot level.  Many sites dance around the issue of whether this can be caused by too-narrow footwear.  My personal opinion, backed up by the idea that this happens to more women than men, is that high heels and narrow toe boxes are self-torture devices.  But back to "Morton's Neuroma."

Dr. Barrett advocates calling this condition "Morton's Entrapment," as it is not a "true" neuroma.  A "true" neuroma, or a stump neuroma, is an often painful ball of nerve tissue which can form at the end of a cut nerve.  These can develop after an amputation, for example.

For "Morton's Neuroma," or "Morton's Entrapment," there are a number of "first line," conservative treatment options, such as roomier footwear, cushioning at the forefoot, and pads to offload certain areas of the foot.  Why not try them first?

This video from Dr. Barrett describes the "second line" treatment of this condition, which attempts to relieve pressure on the nerves by cutting a ligament which holds those ball-of-foot bones together. (I have heard that this can heal, but maybe it will give the nerve time to normalize?)

If this is ineffective, the next step should be radiofrequency ablation.  Dr. Barrett gives a very interesting explanation of his method, which involves real-time x-rays (fluoroscopy), and "burning" the nerve in three places to maximize the chance of success.  I wish we had done this before any surgery.  I really, really do.

"Amputation neuromas," or recurrent Morton's neuromas, or stump neuromas (all referring to the same thing, in the foot) can be treated by radiofrequency ablation also.  It can be tricky, though, as the location of the nerves is no longer as dependable.  We did not experience any success until our third ablation attempt, because the nerve needs to be within about 3 millimeters of the needle for the "burn" to occur.  But again, once a resection surgery has failed, why go through another surgery unless you have to?  You will have more scarring and another chance of a new neuroma, further toward your body.

Oh, and from personal experience, the grand idea of burying the cut end of the nerve in a muscle belly is a possibility, but often does not work because the muscles in the foot are very small.  Barrett's first picture in this article shows a minimally invasive surgery for this method.  It may be worth a try, but was not an option for us because of existing plantar (bottom-of-foot) scarring.

After all this -- conservative method, ligament release, RFA --- if you still have pain, perhaps you will consider the traditional nerve resection (nerve cutting) surgery.  But I beg you to try the other methods first.  The radiofrequency procedure is a needle stick and a small burn, and has far fewer risks than an open surgery, which is likely to create scar tissue (which can create problems for nerves), and possibly lead to true neuromas.  And they burn and burn and burn. My patient has multiple, and they are disabling.  Crippling.

Spread the word... friends don't let friends try "traditional Morton's Neuroma surgery" first.

The disclaimer that should have come first

I have no medical training.  I have read a lot on the internet and spoken to many practitioners.  I have kept a journal for my "patient" for almost two years (I don't have pain -- I am the support person here).  I think I know more about pain and nerves than your average person.  But many times I find that my information or opinions are faulty.  Read this blog for what it is ... a venting session.  If you think you find a nugget of truth, bless you. Make sure to verify it before you spread it too far.

(Good luck verifying it, by the way... even highly trained medical professionals disagree.  One peripheral nerve surgeon, Dr. M, suggested that it should be very difficult to impale a nerve with a needle, because they "move out of the way... they are like kevlar bands."  Another peripheral nerve surgeon, Dr. N, said he didn't know what that other fellow was talking about, that peripheral nerves get impaled all the time.)

And about that "Dr. M, Dr. N" naming convention.  I am paranoia on paper, and I apologize for this.  I have plenty of sour opinions of medical practitioners, and plenty of positive opinions that may turn sour at any moment.  This being a frank blog, I want to express them, but I realize that my opinions are non-medical and apply only to my own situation.  I don't want to cause trouble for anyone (most notably myself).  So, I am using code names for key players, doctors and companies, in an attempt to keep myself out of trouble.

I am also relying on my memory, so quotations may not be exact and dates may be estimated.

And, lastly, don't comment on my grammar or spelling.  Poetic license covers all that.

The very best doctor I have never seen

To give this post some background, you need some background on the AENS, the Association of Extremity Nerve Surgeons.  This website's "find a doctor" tab allows desperate people like me to search for some hope in my area.  Because, honey, modern medicine is marvelous, but it is PITIFUL in the area of nerves.  I hate the word "syndrome."  Do you?  You should.  "Syndrome" is a fancy medical word for "condition we don't understand."  And too many syndromes are nerve-related.  Fibromyalgia?  Check.  Complex Regional Pain Syndrome?  Obviously.  And others.

Anyway, hope and the AENS.  Peripheral nerves are those outside the brain and spinal cord.  I can only assume that the "extremity nerves" are nerves located in the extremities ... the arms, legs, hands, feet...  Or maybe they are just talking about peripheral nerves.  I am interested in feet, and both definitions apply.

Ahem.  Hope and the AENS.  Many doctors don't seem to have a clue about nerves.  We started out this journey by seeing several orthopedic doctors.  And it took us a LONG time (6 months-ish?) before anyone suggested this could be a nerve problem.  I support the idea of this association spreading the word about peripheral nerves.  Sharing techniques and knowledge.  I am excited to see what progress will be made in the next twenty years.

So, back on topic.  We have seen a lot of doctors/practitioners.  Let me tell you about the very best doctor I have never seen, Doctor Y.  After hitting another dead end on the quest for health, I got this fellow's contact information from the website of the AENS.  He was one of a list of several in my state, and I called every single one of them and left messages with polite receptionists.  He shocked me by calling back quickly.  I explained the sad story of nerve problems in the foot that my "patient" had.  I could hear his eyes widening, over the phone.

"I'm not really the right guy for this.  You know the fellow you need to see?  Doctor W."

"Doctor W?  Is he good?"  (Me.)

"I would trust him with any of my family members.  Go see Doctor W."

That was it.  A few minutes on the phone with Doctor Y.  I didn't even have to visit his office.  And this gracious man referred me to the first doctor who has actually been able to do something to fix any of the pain.  Isn't the best doctor the one who knows his limitations and recommends what is best for the patient?

May karma smile on you, Doctor Y.

Just cooling down from the fourth round of RFA.

RFA... That's radiofrequency ablation, for us non-medical types.

Or, for those of us who haven't been researching pain for the last two years, it might be called "burning the nerve."  We won't get into semantics about how that phrase isn't quite right.  We will use it as our visual image for now.

We are also diving into our post-RFA neuritis (nerve pain flare up).  Let's expect our full five weeks of this.  Because after doing this long enough, we have come to expect the worst-case outcome of every medical procedure.  Every little pain in the body, magnified for five weeks.

I come across as a pessimist.  A downer.  Depressed, perhaps.  Who's to say what the best term is.  And I'm not even the patient.  I am just the support person.

Don't be alarmed for me.  Things may be looking up.  And that is why I am writing now.  When there was no hope, it was impossible to write.  If hope is fulfilled, there will be no reason to write.  So now, climbing shuffling up the mountain of hope, I can offer a few insights that might help someone else.

But buyer beware -- pain is different for each person, nerves sneer at medical students' anatomy drawings, and what works for one person will be the downfall of another.

Still, it might be a good read.