Update on my daughter

[Guest guest]

Hi everyone!

Been very busy the last few weeks while waiting for my TCS surgery that is

scheduled for 11/21. I took to our PCP who of course in the end thought I

was a bit paranoid BUT I sat quietly and let him do his exam and evaluation.

Everything he was doing and asking were all the same things done/asked for TCS

but since at this point she doesn't have bladder/bowel issues he only ordered

X-rays and PT then prescribed rest for a week and pain meds. That's when I

brought up the genetic factors but he still wouldn't budge. Of course, as we all

know, the less active we are the less pain we are in. The physical therapist's

evaluation was a bit alarming as I didn't even realize how much pain was

in. She said she had so many pain areas and muscle tension she didn't know where

to begin!! She has had some relief the first couple weeks but then started to

decline as the PT became more strenuous and is back to participating in gym

class.

Anyhow her X-rays all came back normal. Emotionally I broke down because I had

some hope they would find something besides ACM & TCS. So I called her doctor

and pleaded with him to do the MRI. Thankfully he agreed but only to do cervical

and lower lumbar. I picked up the copies yesterday but her PCP is out of the

office till the 11th when she goes for her follow up. So unofficially she has a

4mm chiari malformation and possibly TCS as her conus ends lower than it should.

She also has a small area of fluid at L4-5 but is noted in the interspinous

ligament so I'm hoping this is from when she fell and they aren't wrong about

the location/cause.

So I will be contacting Dr. H today to see if he will consider seeing her as

normally he doesn't see patients under 15. She is 2 months away from turning 15

:/ I would rather not have her wait another two months or longer. As we all

know, timing can be everything. To keep myself strong emotionally I try to keep

telling myself that I suffered all these years getting answers and help for

myself so she wouldn't have to. And am hoping at this point that TCS gets

confirmed and she can get that fixed with the hopes that it will releave the ACM

and allow her brain to go back to where it needs to. I had read that TCS surgery

can actually correct ACM up to 5mm sometimes. And all this can be done before

she starts to have anymore symptoms and permanent damage. She is such an

intelligent, active young lady with big dreams for her future. She is handling

the news pretty well. I try to keep everything positive and she has always been

a very determined child, never letting a fall break her will to accomplish

something or learn something new. Falling numerous times trying to get to the

top of the jungle gym she wouldn't cry but just pick herself up and try again.

When she learned to ride a bike with no training wheels she learned in one day

because she would just pick herself up and try again. She got so bruised and

scraped up that day. I even tried to convince her that she didn't need to keep

trying, that she could try again tomorrow. But no, only 4 years old she said " no

mom, I'm ok, I can do it "

Thanks for listening everyone

Debbie