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.