My long and unfortunate journey of finding out what is wrong with me is coming close to 11 months now. I'm a 15 year old boy. It all started from last december (it is now october) when I started feeling dizzy when I stood up and my balance and coordination was growing very poor. I have to cling to the railing when going up and down stairs and I go very slow. Every time I stood up, I would be dizzy, and it got worse and worse over time. By april I would have to sit down wherever I was because I got severe tunnel vision, ringing and a throbbing pressure pain in my ears. In May it got so bad that I actually passed out in the middle of my hallway in my house. I have a constant ache in my neck, all the time. It's always sore and uncomfortable. I also have a headache almost every single day, and I have had a past of migraines. I had gone to an ENT (ear nose and throat doctor) initially in december who just told me i just had a cold that was lingering. A few months later when i passed out, i went to the pediatrician who then sent me to a neurologist. She ordered an MRI without contrast but told me that she couldn't really help me. The MRI showed that i had slighty low lying cerebellar tonsils, but it specifically said i do not have chiari malformation. After the neurologist sent me away, I went to a different ENT doctor. He ordered an ENG test for me which I took and my results were abnormal. It showed that there is an issue with my central balance, and something to do with vertigo. He told me i should go ahead with another MRI but this time with contrast. Once getting my MRI results, he told me I should go see an inner ear specialist. I didn't get to see the report of this MRI as i did for my first one. At the inner ear specialist yesterday, he told me that the serious thing to look at in my MRI was the low lying cerebellar tonsils and he has sent me to another neurologist and headache specialist to be seen. He told me that the risk of chiari malformation is too great to go unignored so he wants the expert opinion on it because it isn't his field. I haven't gone to the neurologist yet but I am worried. If my original MRI said I DONT have chiari malformation, how could I now? Can it develop between the time of both MRIs (about 3 months)? Or did the contrasted MRI show a more indepth image of it. I'm just looking for some answers. What is the treatment for chiari malformation? What could my issue be if it isnt that? Thank you.
I must say u r lucky it was only 11 months...many of us, including myself have gone our whole lives looking for answers and a dx...so 11 months is a short time frame.
As for having chiari and not having chiari has more to do with who read the MRI report...it is the opinion...many radiologists and even NS's do not recognize chiari as being nething but an incidental finding.
Treatment can include meds and PT...and in cases where deemed necessary surgery...but surgery is not a cure or a fix, only a means to restore CSF flow.
I would suggest u talk to ur parents to get copies of all MRI's and reports so getting other opinions is easier...u will want to talk to a NS that is a true chiari specialist.
There r several related conditions...syringomyelia, tethered cord, sleep apnea, DDD, Ehlers-Danlos, and u should be checked to rule these out.
I want to say for being a 15 year old. I am amazed at your writing and you finding this website. Selma is the one to turn to for answer's. She has sent us all in the right direction. Chairi is a scary issue, but like Selma said. Tell your parent's to get copies of your MRI's and more than 1 opionion. I can't inmagine finding out having Chairi at 15 it took me until I was 47 to find out I had it and it also took 4 year's with doctor's to be diagnois. I wish you the best with your visit to your NS. I pray that you will get the answer's that you are looking for. Your heading in the right direction in getting them. I went to ENT, all kind's of doctor's to finally find out I had Chairi. Just like Selma said. If they are not looking for it. It's hard to be dx because we all have same, but different syptoms. Keep us updated.
You should ask for the results of the ENG (Electronystagmography) as this can tell if you have Nystagmus.
Nystagmus is a form of involuntary eye movement that is sometimes found in people with CM, Dr's can get a good idea of what is causing the Nystagmus by the direction the Eyes move in .Downbeating nystagmus means that the eyes drift upward, and "beat" or jump downward and is common in people with CM, this may not be visible to a Dr looking at your eyes and is why they do the ENG (some times called a VNG or Videonystagmusgraph)
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