Spinal Stenosis Revisiting?

Ash is almost finished with her second year of headstart. On to a new school & Kindergarten in the fall:o)  She is loving her new baby brother and really starting to show her personality.  She has such flair!

So now that our new youngest son is 7 weeks old I'm playing catch up on Dr.s appts after being on bedrest for the last 2 months of my pregnancies.

Ash had a check-up with her ENT. Her right tube that was just put in in December is out already!! That is some major head growth and a bit disturbing.  Her Dr. says maybe she'll be OK and to watch for signs of infection and we'll go on from there to see if we'll replace it or not.

She is still having these major bouts of sweating/tired which hopefully the endocrinologist (if he wants to see her) can shed some light on.

At her appt. last week with her pediatric orthopedic doctor he noticed she had developed clonus (involuntary muscle spasms of her ankle/foot).  I can't say that I'm surprised considering how much she falls on a regular basis, every time she tries to run it's just a matter of time before she falls.  I think it stems back to the syringomyelia (cyst in her spinal cord) caused from the compression by her foramen magnum.

 Considering the spinal cord doesn't regenerate it makes sense that there would be long term damage from the cyst. As the cyst filled up with cerebral spinal fluid it damaged it and from what I'm reading now apparently there is no cure for a syringomyelia. Crazy because that's not what I was told when she has her decompression surgery.

So at the moment the questions are is the clonus a symptom of the previous spinal cord damage, or has her kyphosis caused such a bad case of compensating lordosis that she may be experiencing spinal stenosis in the lumbar region as well. She's been complaining of neck & knee pain (mostly her right) for months now & sometimes she has pain in her ankle. Sometimes when I ask her what hurts she shrugs her shoulders & says very matter of fact "all my bones mom, just all of them hurt". She sounds like an adult with a "what can I do about it, it's normal" attitude:o(

She's scheduled for an MRI on Monday from top to bottom of her spine, so we'll be able to see if her syrinx (another name for a syringomyelia) has gotten any better/worse & how things are growing since her last post-op MRI in almost 3 years ago.

As I'm reaching our to the POLP community I'm learning that repeat surgeries are not so uncommon and these children need follow up. In my opinion follow up is common sense, but for some reason it seems as though when we went back to the neurologist for a follow up when she was still complaining of pain several months later, we were told all was fine and her issues were ear related.  UUUGH,.........Pause............. I'm claiming peace right now, I'm signing off and we'll see the results Monday and follow up with the neurosurgeon in 2 weeks, so until then all is good and that's where my energy is going.....