Everything is happening quickly
My daughter V (6F) was born with some medical issues that were founded when she was 6 months old due to a mri scan for possible tethered cord but found that she had syringobulbia and syringomyelia. She would see a neurologist every 2 years for follow up but the last one she saw when she was 4 made it seem like I am over worrying and that she doesn't really need to be seen unless she is showing symptoms, even though her last doctor said she needs to be monitored.
A few months ago she started getting weakness in her hands and legs and she had fallen a few times and things at random become too heavy for her and she now gets headaches, i called for an emergency pediatrician appointment and got a different doctor who basically scolded me for her only being seen once every 2 years with MRI and asked if my daughter had chiari malformation. I didnt know because none of the other doctors ever mentioned that to me, always just about thw syrinx (cysts) inside of her spinal cord.
I am happy I got thay doctor because she put in a lot of things that day that got the ball going, when I saw her actual pediatrician she was upset with how the last dr put in mri request for the total spine and lower brain(?) And didnt "understand" the emergency of it and tried asking why did she put all of this in and that basically my daughter isnt that bad. After the MRI was done my daughter already had a follow up to neurology, I got a message one the patient portal that the neurologist can't see my daughter and she is referred to neurosurgery now. Found out her cyst inside her spinal cord has doubled in size and is compressed against the nerves causing her issues. She had an appointment in 2 weeks now with the neurosurgeon.
When my daughter went for her check up and her pediatrician was asking if I heard anything and I let her know i did and she talked about how she got a fax and there was just an empty spot in her spinal cord, acting like it wasn't a big deal. I explained she is now going to see a neurosurgeon in 2 weeks, and she said that is quick. Obviously it is quick because there's an issue going on, cant say she has gait (walking) issues and not think there's an issue, and then she has a lot of headaches and jist want to chalk it all up to where she needs to drink more water???
Now she is seeing an awesome neurosurgeon and they're "stumped" how the cyst has doubled in size and is now causing fluid building up in her brain. She is now going to get another mri (her 3rd one in 2 months) to check if there is anything causing pressure to the brain (additional fluid on top of the brain) and if there's any abnormal inflation, and also an appointment to neurology tomorrow to see if there's any rare conditions that can cause swelling or inflammation in the spinal cord, then the next day to an ophthalmologist to check her eyes to see if there's pressure building, and the one that is giving me the worse issue is urology.
They literally canceled her appointment because they booked her for a 10 minute slot saying she needs a 20 minute slot for the eurodynamic testing, plus an ultra sound. She is having issues with other things and they think she might also have an occult tethered cord that wouldn't be captured on an MRI. She was born with a sacral dimple and it was deep and that is when she got the mri at 6 months due to her first pediatrician thinking it might be a tethered cord, which it wasnt but that is how we found the cysts.
The urology is giving me issues and I have called the neurosurgery team and they've been so kind and helpful, and I am waiting for 4 ½ hours until they open so I can call and see what is going on with urology and if the ultrasound is going to be booked separately or same day with the eurodynamic testing procedure. It is such a headache and I feel so overwhelmed.
At first after the MRI in June, it was simple of she is having a lot of symptoms and they want to do surgery to fix the issue, then after the second MRI in July it didn't show what they were expecting, since she is now having fluid building up in the brain they expected to see "webbing" or a blockage in the lower base of the brain. But there was none. So the neurosurgeon had a conference with her colleagues, and she said with the 4 of them there's over 70 years of experience in one room and that they're stumped because they cant see what is causing the syrinx to grow, and the one in her lower back is now an abnormal shape from the June Mri, and they want to take extra steps to see if they can find the issue before placing a shunt into her spinal cord. Her neurosurgeon said that they would cut a hole into the spinal cord to put in the shunt, and since she has nerve damage it can cause more damage.
The appointments have been made from 6 days to 2 weeks out. V gets scared when she cant feel her legs or that sometimes they're "falling asleep". She drops things and it makes her feel bad, because she doesnt know why it happened. She tells me and her dad that she is scared and we comfort her and tell her what is going on and that she will be ok. Her older brother S who is on the spectrum, the thing is he only likes to be touched when he wants to be and sometimes gets a bit upset when she just runs up and hugs him. But going to a lot of these appointments with us he is asking if she is ok and has slowly gone to her when she is asleep and hug her.
I find it difficult when your kid tells you they're scared and there isn't anything you can do except take them to all the appointments and they know they will have surgery soon. I am glad everything is going in motion but I wish urology would be more helpful instead of treating me like I put the orders in wrong. I just want everything to turn out not as bad as they're making it seem.