My 2 yr old has been having severe headaches that lead her screaming in pain resulting in vomiting. All of this started in March 2018. Recently, her balance has been a bit off and falling a lot. She had an MRI and this is what the report says “Cerebellar tonsils terminate at least 6mm below the foramen magnum and demonstrate mild pointed configuration. Findings suggestive of mild Chiari I deformity. There is a small 4mm T2 hyperintensity lesion in the left cerebellum without restricted diffusion, magnetic susceptibility, or enhancement. This may represent nonspecific focus of gliosis or demyelination secondary to remote insult, but other lesions are not excluded. Uncertain etiology.” The soonest I can get into a neurologist is the end of August, I have no clue what any of this means and my daughter is having headaches more frequently. Tylenol and Motrin do not help her and I’m so lost on what I can do. Thank you in advance!
Hello, sorry to hear about your level of frustration. It is easily understandable. If you read some of my prior posts, I have frequently wrote about the time frame it takes to get in to a neurosurgeon. I am not a doctor, but the lesion in the cerebellum sounds like a fluid/tumor. So, that’s what Chiari does, it blocks the CSF in different places, jams it like a kinked garden hose. (again, I am not a doctor, but sounds like hydrocephalus/tumor to me)
If it was my child, I would keep the August appt. because a neurologist will go in detail about any issues she is having. However, it is a neurosurgeon who can call the shots about surgery and options regarding that.
If possible, I would also travel to get other answers, whether in state or out of state if you can’t get to a neurosurgeon close by. It is very humbling how long sometimes someone with our condition has to wait. However, my rules would change drastically if it involved one of my children. I would be speeding things up like spitfire because I know the damage Chiari can do.
Also, here is some encouraging news for you. Children are getting diagnosed early with the help of modern technology. I was diagnosed at 40 years of age. At two years of age, she can have this thing diagnosed, have the surgery, and live a fairly normal life by the time she even starts kindergarten. Being diagnosed at 40 led me do syringomyelia with permanent damage. So, there is hope for your child.
Also, get a few opinions, no matter how much the price may sting. Brain surgery is a serious issue, and you need all the info you can get to formulate your own opinions. At this point though I can tell you, I am sure they will not take conservative action. Also, you want to make an appt. with a neurosurgeon (one who specializes in brain/Chiari surgeries). The neurologist will just tell you things you already know about your daughter. For me, they are a waste of time of money. For a child though, I guess those things would have to be documented. To speed things up, make an appt with a neurosurgeon. I think those are the answers you are looking for.
Also, summer heat for long periods of time, salty foods, strong scents (air fresheners, glade plug ins etc.), exposure to sunlight for long periods of time, and exposure to stimuli that is too exciting (loud tv, loud music, social atmospheres, etc ) can bring on the chiari headaches. Dollar tree sells these eye masks with gel beads. I have a freezer full
Thank you so much for your advice and thoughts! it helps so much! I actually got a call from the neurologist office today that they had a cancellation tmrw and would like her to be seen tmrw! So we are going tmrw! I’m part of a chiari support group on Facebook as well and a lot of people told me to skip the neurologist and head straight to a neurosurgeon. Im going to see what this neurologist says and go from there.