My son has struggled with breathing and swallowing issues since birth. He’s now 18mo, after A LOT of pushing I got doctors to do a sleep study when he turned one, that came back extremely severe for central and obstructing sleep apnea. Got a referral to ENT, they couldn’t see anything, so they referred to Neuro. Neuro had a swallow study done (while we waited for a sedated MRI) and he’s aspirating everything and has to be on nectar consistency.
Had the MRI today and the results have scared me to death. I’m still waiting to hear back from Neuro to translate most of this. But what I’ve found through Google is scary.
I’m not even sure what I’m looking for at this point. Directions on how to best advocate for him? Best doctors?
Currently his symptoms are:
Excessive drool
Sleep Apnea
Choking Swallowing Issues
Occasional strider
Possibly Balance Issues/excessive falling
His test results say this:
“The cerebellar tonsils are pointed inferiorly, compress the CSF space at the foramen magnum with mass effect on the brainstem and upper cervical spinal cord, and extend at least 19 - 20 mm below the foramen magnum. The obex is located above the foramen magnum. The cervical spinal cord is visualized through the conus medullaris on the sagittal large field of view T2 sequence, without a large syrinx identified.”
In a different spot it says: “Chiari I deformity with crowding at the foramen magnum and compression of the upper cervical spinal cord, but without
appreciable syrinx.”
Hey Jessie,
Firstly, Welcome to Bens Friends.
I completely understand that for you as a parent, this is a massive shock to say the least. But I’m going to ask a favour of you… …slow down. In situations like these our minds can run at a million miles an hour, well, that is, when I was given a neurological diagnosis…OMG and the first thing I did was PANIC. But you need to slow things down so you can think straight. Panicking makes the mind run way too quick and my thinking just went to mooosh.
Now, I’m in Australia, so I’m not sure about best doctors, other members may have more advice in regard to this. But here is a link from the NIH, at the bottom of the page are some contact details of agencies, they should have more information regarding Dr.s
Chiari Malformation Fact Sheet | National Institute of Neurological Disorders and Stroke (nih.gov)
Google ‘can be’ a good resource for information but PLEASE DO NOT BE RELATING EVERYTHING YOU READ TO YOUR OWN SITUATION. Some of the info online may not relate to your situation. Your son’s diagnosis needs to be explained to you by a FULLY trained and qualified neurologist or a neurosurgeon in consultation with your son’s scans. Not ‘Dr Google’ and not ‘Dr Facebook’. No two neurological situations are ever exactly the same, so trying to compare differing patients can be VERY difficult. I say this because I’ve tried to compare, it only served to confuse and stress me even more.
Now, there can be some treatments for Chiari, but they ALL really depend on the neuro’s assessment. There are many things that need to be taken into consideration in making that assessment, way more than any of us can assess.
Please make contact with those contacts on that link above and find a paediatric neurologist near you.
We are here for you if/when you need.
Merl from the Modsupport Team
I’m so sorry that you are going through this. I highly recommend that your son sees a neurosurgeon that specializes in Chiari. Neurologist’s in the USA tend to not be educated on Chiari. That doesn’t mean that he will definitely need surgery. However if he does need surgery, kids tend to do much better then adults. They heal quicker, and often their symptoms resolve completely. I know it’s incredibly scary, but it’s really a blessing that you found out now.