Answers!

Yesterday was the big doctor's appointment.  Giles and I had a consultation with the Musculoskeletal Oncologist.  He's one of the best doctors we've ever encountered.  He pulled up the CT and the bone scan on the computer in the exam room and talked us through all the elements.  He educated us in a discussion tone, rather than as if we were too dim to understand the variables.  He spent a good 30 minutes with us and even dictated his letter to my orthopedic surgeon with us in the exam room.  He talked with us - not to - us, very respectfully, treated us as if we were partners in the process, and acted as if he had all the time in the world for us.

My OB/GYN is like that.  She's fabulous.  If only one of them were an internist or family practice physician.  I adore doctors who are thorough and have fantastic bedside manners.  *happy sigh*  Finding a fantastic scientist with a fantastic bedside manner is a bit like asking Sheldon (Big Bang Theory) to get warm and fuzzy.  The two characteristics do not generally come in the same package.

Enough mooning.  On with the answers:

I do, indeed, have melorheostosis.  (Correct pronunciation: Mell-or-ee-ah-stow-sis)

Melorheostosis is congenital.  I was born with it.  I have a very, very mild case and it is NO BIG DEAL.  If we had x-rayed my left foot when we x-rayed my right foot back in 1987, we would have seen the melorheostosis in the second left metatarsal.  Of course, everyone would have panicked.  My parents would have taken me all over creation looking for an answer and probably would have protected me like a China doll.  How thankful am I we did not find it back then?  The very good news is it's no big deal.

Typically, when a patient presents with Meloreostosis, it is everywhere.  The dripping candle wax appearance lights up in all the bones of one limb.  Some patients have it in all their bones, all over their body. I am special (fancy) and only have it in the second metatarsal in the left foot.  Of course, we have not done a full body scan to see if I have it elsewhere, but it really does not matter.

Melorheostosis does not influence blood flow or marrow.  It is not life threatening.  It just is.  Melorheostosis is a hardening of the cortex.  Remember the x-ray of my foot?  Remember all the white stuff in the second metatarsal?  That is the dense cortex.  It is not dangerous.  See the white stuff in the circled area?  That is the melorheostosis.  It's a thickening of the cortex and and is just how my bone developed.  It is not dangerous and I should not have a single, solitary issue with it for the rest of my life.

So, why the pain?

The oncologist (easier than typing "musculoskeletal" every time) believes we have been "faked out" by the melorheostosis.  He believes the pain is Reflex Sympathetic Dystrophy.  Doctors usually see RSD in patients who have recently injured a joint or have lost a limb.  You know those stories of amputees who can feel their lost limb?  That's RSD.  It is basically the brain sending confused signals to the nerves to react to pain.  Those signals get sent back to the brain and the cycle perpetuates.

When a patient presents with RSD in the hand after injuring the wrist, one of the therapies is to submerge the hand in sand, then cold water, then rub it with denim to desensitize the skin.  The goal is to reset the signals, I think.  Because my left foot is experiencing the pain, I need to get out of the boot, stay off the crutches, and use my foot normally.

This explains why I had more pain in my foot the more I rested it.  It needed - needs - the desensitization.  This also explains why the left foot is colder than the right foot.  It explains why the pain comes and goes and is entirely inconsistent.  This explains why sometimes my toes feel numb or tingle and why the pain seems to float to different places in my foot.  Ahhh... do you see the pattern here?

My oncologist (that just sounds wrong) said RSD is highly under-diagnosed and most patients go from doctor to doctor to figure out why they are in such pain, despite all tests coming back negative.  Because it typically follows an injury to a joint, many patients are told the lingering pain is just in their heads.  Turns out the pain *is* in their heads, but it is very real.

I have a very mild case in that putting covers on my foot does not hurt.  I have no swelling.  The skin is not shiny.  The foot does not sweat.



So what do we do about it?

The therapy best suited for me is medication.  The plan is to take one Lyrica twice a day for two weeks. I am to call the office tomorrow and tell the MA if I feel better or not.  If my foot feels better, I complete the two weeks, then we back down to 1 pill for two weeks.  And... that should be it.

If my pain has not greatly diminished by tomorrow, we add a third pill a day for two weeks, then back down to two pills, then one.  If my foot does not feel absolutely normal and fantastic in a month, we will do an MRI to find what he believes will be a hidden stress fracture.  If I do have a stress fracture, at that point he will put me in a hard-soled shoe for six weeks.  Ick.

My personal belief is I will be super fancy in a month and will be back into the regular groove of my life.



So what does this mean for running?

Hold onto your hat.  It means I can get back to it once I'm healed!  YES!  Well, I will need to start slowly, slowly, slowly.  By slowly, he means start with walking around the block.  My thought is to start by walking around the block in my Vibrams, then adding a half-mile the next week, then adding until I can walk comfortably for a good 30-45 minutes.  Then, I will add in running 1/4 mile a week until my feet are strong and ready to run.  Yes, I will ask him about my running plan at my follow-up in July.

Until then, he said no elliptical, no running, no walking for exercise, just live life without workouts until we get this figured out.  I have not exercised since April and it's deeply annoying.  Oh well.  There are much, much, much worse things.

My brother asked if we could do a 1/2 marathon in February.  Yippee!  I figure if I can start exercising again in late July, I might be ready for a 1/2 marathon in seven months.  We shall see.  My brother said he would run with me.  *grin*



So, Fancy Lady, tell us how you feel about all this.


I feel fantastic.  I did not realize how much this weighed on me until yesterday afternoon.  I feel positively giddy.  I feel so fancy and magnanimous that I bought my children and Babbs' children candy on the way home.  I never, ever, ever do that.  Ever.  Seriously, though, what kid does not want candy that looks like a toilet and plunger?  That's how good I felt. That's how good I feel.  Babbs and I shared coffee and the kids got candy.  Babbs, God bless her, kept the kids while Giles and I went to the doctor.

Relief.  Peace.  Thrilled.  Light as air.  Calm.  Excited that I can be a runner after all.  Do you know how happy I am to know I didn't waste money on Vibrams and Skirt Sports gear?

Thank you, thank you, thank you for all the prayers.  I feel as if we have some solid answers and I feel fantastic.  Did I answer all the questions?  If not, comment below and let me know.


Edited 6/14/12 to add:
The purpose of the Lyrica is to relax the impulses from my brain to the nerves in my foot. Hopefully, it will allow the impulses to slow down and stop the cycle of RSD.

My oncologist said some swimming is fine, the water park with the kids is fine, but to not go crazy with getting around too much because we have not ruled out a stress fracture until we see if the Lyrica works.  How's that for a run-on sentence?