Just a few words or phrases you don't want to hear at an appointment.

Perplexing

Puzzling

Far fetched

Unsure

Confusing

Quite the mystery

Never seen this before

Nothing makes sense

I don't know the answer

I need to brainstorm with colleagues

I need to dig into literature

and the four letter word that keeps coming up

RARE

The above words and phrases pretty much sum up a lot of today's discussion.  We met with Dr. Smith today who is a pediatric neurologist.  We were very lucky to get a face to face appointment.  He was very thorough and spent over two hours with us.  Duke has stopped all face to face appointments. The only time a patient will see a MD in person is if the situation is emergent or urgent.  Today, at our oncology appointment, we were only able to speak to the doctor over the phone.

(I loved that he wrote down his history with a pen and paper.  He said he had studied up on Braeden's case, but he wanted to hear from Braeden what was happening.  He wrote 2 pages worth of notes. I sure hope that something he wrote will solve this mystery story we are in.) 

Simply stated the doctor just doesn't know what the heck is going.  Braeden's case is just that rare.

Current Issues

Right and left hand weakness.  His left hand has about 20% functionality per Braeden.  Braeden guesses he has about 60% functionality with his right hand.

Left leg and foot tingling/numbness doesn't seem to be worse from last week.

New Issues

He is now experiencing "cold spots" on his upper leg.

Rare cases take time to figure out.  Obviously, we want answers.  This Mama needs an answer.  This child cannot keep losing function of his extremities.  (Positive note, Dr. Smith was pleased with the strength of his left leg considering the amount of numbness and tingling and lack of reflexes he has on that side.)

Big word of the day

Hirayama, this is his best "far fetched" guess as to what might be going on with him, above and beyond the spinal cord tumor.  I am trying not to be a internet doctor,  but some of his symptoms definitely resemble this condition. (This is a rare cervical myelopathy that presents itself as a slowly progressive atrophic weakness of the arms and the hands.)  His left foot and leg issues don't fit this diagnosis.

The Plan

Dr. Smith is going to collaborate with his neurology colleagues and brainstorm about his case.

An EMG and another MRI may happen after the brainstorming session. 

1. EMG of the left leg-this will rule in or out peripheral neuropathy.  
2. MRI flexion study-basically this is a type of MRI that they will have Braeden bend his head back and forth and measure any compression of his spine that may be happening.  This type of MRI is not typical, and he is going to see if it is possible to be done at Duke.

Dr. Smith is going to take another look at his full spinal MRI from last week, and also ask the radiologist to review again.  He wants to ensure that there is no ligament thickening that could possibly be compressing his spine.  

The doctor ordered a bunch of labs.  (These are to rule out the simple things, before we continue to tackle the not so simple.)  Dr. Smith thinks that all of the labs will come back normal.  Braeden and I were just hoping he had blood left after filling those vials.  

For now we will continue to wait, and hope that the mystery will be solved soon.

#BraedenBrave

#MrUnlucky