My 11 month old son was diagnosed due to the measurement of his head. He was above 99% for his measurement at his age. He had an MRI last week and was diagnosed with CM1 .... We won't know much more until he sees the Neurologist in 2 weeks. In the meantime, we are looking for some advice and hope.
I wanted to know if Chiari gets worse with age or is it possible to get better without surgery? I'm sure I'll have more questions, but for now this is my main concern. I'm hoping surgery isn't needed and he will get better -- but what would the likelihood be for that?
hello there and welcome to the chiari malformation forum. Congrats on having your son, you are being very strong for not giving up and going out to look for answers.
Chiari is one of those things were everyone is different and you should get second opinions on everything that happns from here out. Right now you son is little, however he will grow up and will be running around and running into things. You cant put him in a bubble but I would watch him closley, because the chairi can get worse if he seriouly injures his himself. Chiari is not known to just get worse on its own however, it can get worse if someone doesnt take care of themselves.
Surgury is not always an option. I have chairi I and i also have a syrinx on it that puts me at a higher risk during surgury to bleed out. However, Chairi wont go away without surgury but many people live with it. If you do get news that a dr. would like to perform surgury always get another opinion. Having surgury too young might not be the way to go because the ehaling process from surgury is long and not an easy road. Hopefully you get the answers you are looking for and everything turns out for the best.
Chiari is the malformation of the skull, so it can not get better....surgery is to restore CSF flow that is obstructed from the cerebral tonsils that herniate. There is also a possibility if overcrowding or a retroflexed odontoid....
U really want to know what is causing the excess CSF build up is it the tonsils, or something else? Could be ICP, PTC....ask ur childs Drs.
If ur child has so much CSF fluid building up that changed the size of his head, I would say he must be in pain as well....
Which surgery r they suggesting, chiari surgery, or shunt surgery?
Glad to welcome u , sorry for the reasons u had to seek us out,.
These are the results of his MRI scan. I am unsure of some of the meaning, as I am still learning the medical terminology.
I don't know how much fluid build up he has, but he never seems to be showing signs of pain, as most would predict. He's generally a very happy baby. The only outward symptom I can associate with Chiari is his imbalance (besides his head circumference). All other symptoms have not been seen.
If anyone could help me understand the results I've posted here, I'd be very appreciative!!!
There are low lying cerebellar tonsils bilaterally with tonsillar tissue approximately 4 mm inferior to the occipital cortex. As a result, there are enlarged ventricles with prominent CSF spaces surrounding the cerebral hemispheres.
Otherwise, the brainstem, thalami, basal ganglia, cerebellum and cerebral hemispheres have normal signal and morphology. There is normal flow void the vessels at the skull base. There is cavum septum pellucidum et vergae. The globes and orbits are unremarkable. Each cerebellopontine angle is normal. The sella and parasellar region are unremarkable.
There is no abnormal susceptibility artifact.
Diffusion images reveal no abnormal restricted diffusion water.
IMPRESSION: 1. Low lying cerebellar tonsils consistent with Chiari 1 malformation resulting in enlarged ventricles and CSF spaces.
To answer your question on the surgery:
They haven't suggested surgery yet -- he doesn't see a Neurologist for another 2 weeks. But I know that the only treatment is either monitoring or surgery. Which one they will choose for my son, I've yet to know. If I could understand the medical terminology of the results of his MRI I would probably know more. I'm hoping someone could help me in that department. At least until we see the Neurologist.
Well, u need a neurosurgeon at this point, not a neurologist...and I suggest a true chiari specialist . DO research the drs and make sure u see a few to compare what is being suggested.
What has me a little taken aback is, the 4mm herniation, and low lying tonsils and then they called it Chiari...many Drs do not consider a herniation shorter then 5mm's chiari...not that it isn't, just that most Drs do not.
I would think that a CINE MRI would be the next of testing ordered....as well as more MRI's to check for tethered cord, a syrinx, and disk issues....
Again, not being a Dr or medical professional, I am confused by the wording on this MRI too.....
What is good news there is no kinking of the brain stem as it states the morphology is normal...
Yes, he is scheduled to see a Neurosurgeon -- I got the two confused. Sorry.
I wanted to know, but I'm sure I'd have to ask a Dr., but I wanted to know if this condition could be brought on by trauma to the head. My son fell (in a sitting position) when he was first learning how to sit up and hit his head on the hardwood flooring. And I don't know why they consider it Chiari either. I wondered if when he fell, that could have created this condition? I heard that trauma to the head could possibly bring on symptoms, but is it possible that the trauma created this from the beginning??
I don't know what a CINE MRI is, but I'll look into it. And if the Neurosurgeon doesn't order more MRI's to check for tethered cord, a syrinx, and other disk issues, I will request it or see a different Dr.
I always wondered if a trauma like that could have SOME damage and now I wonder even more.
Yeah the MRI results are confusing. I guess it doesn't help much.
No, the NS is not a Chiari specialist, but a NS Professor of Neurosurgery .. he has been recommended by our local pediatrician. The Chiari specialists do not live anywhere near here. I hope I don't have to do too much researching for Dr's because I understand the best Chiari Dr's are located in NY which is too far from here. But I will do my best to get all my questions answered.
Chiari mom as Selma said previously if they still say chiari and especially if they want to do a decompression surgery please get a chiari specialist. I fly to Colorado and if I buy in advance I can get a round trip ticket for $100.00. I think you can get more testing local but I would start studying Drs. I will pray for your son.
I know NY isn't the only Chiari specialist location -- I just know the Institute for Chiari is based in NY. There is a specialist that works with Chiari patients in Chicago which is much closer to me. So if they want to perform surgery, I will check into a second opinion from there.
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