Just got the news that my 7 yr old has a chiari type 1 malformation with an upper cervical cord syrinx, small left temporal lobe developmental venous anomaly.
Says there low-lying cerebellar tonsils 18mm below foramen magnum. The are pegged shaped crowding the foramen magnum. There is roughly 4mm trans x least 9 mm(cc) long syrinx involving the upper cervical cord seen at the c2-c3 intervertebral level.
We will see the neurosurgeon February 7 and are still waiting to get into the neurologist. He does has headaches in the front and back of his head. Things are complicated for him as he also has cystic fibrosis and chronic sinusitis from the cf. Hs back and neck ache at times too. His whole body will hurt and times his feet and hands go to sleep fast.
Any suggestion and thoughts about this I would appreciate it.
God bless you and your precious son who already seems to have enough to deal with. As a nurse, I always say that God should only give each of us only one disease to deal with at a time. My 4 yr old grandaughter was diagnosed in Aug, had surgery in Nov. and seems now to be well on her way to recovery. We are waiting for her post op MRI in May to see if her syrinx is gone. I just wanted to respond to Beebe telling you to post on the parent's group site. I find this site to be much more informative. If you go to the parent's site, you find very little activity. I think the last post was from September! I hope the little activity is because children do so much better than adults and get on with their lives.
Squeeky, so rry you have joined the ranks and have Chiari to add to your list of worries.
I am an adult dealing with CM1, but I am more than happy to answer any questions I can. Do you have any specific concerns?
One suggestion I would have is to look through the list of symptoms often associated with Chiari and write down every one that your son deals with, even if you don't think it relates to Chiari. And I would list them in severity, the most severe being top of the list and least severe being at the bottom. And I would note when you first noticed the symptom. It's important for the neurosurgeon to see the whole picture.
I just think it's best that they have as many things to draw from to make decisions for treatment- the scans, the medical history, the symptom history, the neurological exam-- they are all important.
I will keep you and your son (and your family) in my thoughts and prayers,
Thank you. I have been looking at the whole picture for him. He has serve chronic sinusitis that causes headaches in the front of his head. He also gets them in the back of the head associated with pain in the neck, back and arms. He is always tired and barely makes it through school before he gets on the bus and falls asleep or does so at home right after. His O2 is always a problem due to his CF. His arms and legs get to hurting him so much that he will cry if he has to walk or move at times. I just not sure what options for treatments there are for him??