My daughter has been getting Physical therapy for sometime now for her Torticollis. As she is developing she has had a few neurological symptoms. We saw a neurologist for our concern he thought she might have had a stroke.We had an mri done and found Type 1 Arnold Chiari Malformation. I am trying to educate myself as much as possible before meeting with the neurosurgery. My concern is it seems abnormal for her to be showing these symptoms from what they tell me and what I have read. But all of her symptoms are why we got the mri to begin with. numbness, weakness, vision issues, swallowing issues, partial paralysis (on occasion), sleep apnea, gerd. Her PT says we should speak with them about braces on her legs. Why is she having these symptoms? mild type 1 ACM. Could there be another issue or diagnosis as well?
I am so sorry u and ur child are dealing with this, not just the condition, but Drs that really do not know...to say this is mild when ur child has all these symptoms is mind blowing to say the least. From what I have read the Torticollis may be a first indication of Chiari,....
Have they done a CINE MRI to check for a CSF obstruction? Many with Chiari also have related issues, as u already mentioned sleep apnea....the numbness could be chiari or a related issue called syringomyelia...it is a syrinx or cyst like cavity that fills with CSF as it grows it can compress nerves and blocks normal flow as well....most Drs only look to the cervical spine for a syrinx, but they can form in the thoracic and lumbar spine as well....disk issues ....then other issues, and I know this is a lot, but ICP, POTS, and Ehlers-Danlos.....
U will want to find a true Chiari specialist to help guide u and do this testing.....we do have a list of Drs for use in researching Drs...not all on the list may be true Chiari specialists and they all may not treat pediatrics...so u will need to call and see a few in order to find the one best for u and ur DD....Keep in mind the list is not a referral.
Thank you for your help and support. I will look into all of this. And write down a few more questions for neurosurgery. Thank you also for reminding me I am not alone. This is some scary stuff. I have a very loving family and I know we can get through this I am just so frustrated. I wish there was a clear answer to anything! I understand now that is part of the struggle.
We do have a list of ?'s for the NS....the problem with having questions sometimes they throw a curve ball and leave u like a deer in head lights...so always ask how u can contact the Dr after u go home and formulate ?'s as u will as it sinks in.....many will give u an e-mail to use to ask more ?'s....this works well.
But having a list of ?'s is a good idea, but make sure to take someone that will read them off for u when u get that deer in head lights look....
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