So I have been doing a bunch of research, and I have read that Chiari I is something that is congenital (something you are born with), so I was just wondering, when did symptoms present themselves to you? When were you diagnosed? have symptoms progressed over time. My son is 7 and was diagnosed, so I am wondering if his symptoms are more than likely going to worsen and what to expect really, as of right now, he gets headaches pretty often, he is clumsy and has a lack of balance often, his eyes go crossed sometimes, and he wears glasses due to blurry vision, About 2 weeks ago he passed out (syncope) and threw up accompanied by a headache, which caused us to go to the emergency room and got the diagnosis of CMI and SM and transferred to a Children's Hospital.
I am sure I am rambling on here, but I just have so many questions. Thanks!
I am glad you found this website, it has been a great support for me. My 18yr old son suffered from migraine headaches for 4 years before he was diagnosed with a 7mm CM1.(but no syrinx) His symptoms started 4-5 years ago with just headaches, over the years the headaches changed and worsened. the last year he developed other symptoms, IBS, trouble swallowing, weight loss, anxiety, nausea and his headaches were restricting his activity.
we consulted a couple NS's and both said he was born with it and you never know when the symptoms will strike and the symptoms can stay the same for many years or it can progress very rapidly, they can not predict as every patient is different.
My son had his decompression surgery this past September and he is now doing great!! We are very lucky, all his symptoms are gone except the anxiety, but anxiety runs in both sides of his family so we don't think Chiari is causing it, just aggravated it.
I recommend you see more than one NS and do a lot of research yourself. The medical community is not always cooperative and have a tendency to down play the Chiari. Be your sons advocate! Get copies of Dr. notes, scans, tests..etc. Read them and make sure your questions are answered. Our primary physician and NS are awesome but the staff....not so much. I was the pesty mother who called and called to get the tests scheduled, copies of reports, appointments made, etc.
Please keep us up to date on your son and we are here for support!
My daughter had migraines from as long as I could remember, we come from a line of migraine suffers so I wasn’t too concerned until her migraines got to the point where she was missing 3 mornings a week of school in grade 9 at 15 yrs old . She also started having pain in her neck , shoulders , back, hips and knees and was always tired. Then the numbness in her hands and feet started and a couple of black outs it all came in a matter of about 3 months we were sent for a for an MRI in June of that year within days she was sent to a big hospital 1 hr away from us. She was diagnosed with a 5mm herniation which of course they weren’t concerned about because they felt she was a symptomatic. She had another MRI 2 months later and said herniation had shrunk to 4.7mm so they no longer consider it chiari ( yes I know a joke as we all know someone with a 0 chiari can be worse than someone with a 15mm) anyway over the last year and half she has had yet another MRI and miraculously she is cured no chiari at all. Hmm first one cured I suppose she should be in the miracle medical books . Her headaches are getting worse , she now has stomach issues, her period is all over the place, she looses feeling in her hand so she can’t use it from time to time, blood pressure is all over the map, pain is still there all over, and she is still tired all the time , feels sick to her stomach is light headed daily, but she’s cured as the drs said so she won’t go back to drs anymore. If I take her she lies to them and says she’s fine, she wants to be a police officer and knows she might not be able to if it shows on her medical. , I’m very frustrated all the way around. Get your son diagnosed early see as many drs as you need to until you’re comfortable with your decision once they get old enough to have their own minds it’s difficult
I can remember having headaches all my life so bad my nose would burst nightly, I have always had bladder control problems. In my teens I began to get double vision and muscle problems my leg would buckle out from under me and many times I fell, and then the headaches took on a whole new form when I was 19 it felt like my head was going to explode if I coughed, sneezed, laughed, bend over and this has gone on for years now I get 3 month long headaches with a week to a month in between, in my early twentys I began to get joint problems first my wrists then knees then anckles and so on, even my jaw, and my back. In my 30s I began to get numbness and tingling in my face, hands and feet and my hands began to lock up from time to time, now I’m 40 I have loss of words, confusion, insomnia, vertigo, heart arrhythmia, fast heart rate 100+ bpm, swollowing problems and swelling and pain in all my joints I have herniated discs in my neck as well as stenosis I have osteo arthritis and the list gets bigger with each Dr. visit. I was diagnosed Nov. 22 at 40 years old, it can get progressively worse, but not always so just know the symptoms and ask him if he has any of them he may not know it’s not normal I didn’t know that everyone did feel like I did I thought it was normal for your head to feel constant pressure or have ringing in the ears and such so ask the right questions and tell the doctor be his advocate doctors don’t always listen and dismiss valid things so don’t take no for an answer good luck to you and your son!
I started experiencing symptoms just after my 32nd birthday about a year ago. The symptoms have pretty much stayed the same since last year, although they tend to run in groups where I might experience one set of symptoms for a few months, then experience different set a few months afterwards.
however, going through my old journals and diary from my teen years I am starting to pull out small situations where the symptoms possibly were manifesting themselves but I just didn't realize it. I would have really stiff neck and shoulders occasionally, once and a while I would feel like gravity was pushing down on me. Like Michelle, I just thought it was normal; something everyone else experienced. Now I'm seeing that it's not.
It makes me happy to see so many proactive parents on here. As a child, my parents (namely my mother) had a strong aversion towards modern medicine and hospitals in general. There were a few times where I REALLY should have been taken to the hospital but my mom thought otherwise like a bad car accident as a child. My mother decided to forego any medical treatment after the accident, even under the urgings of the EMTs that arrived on site. Now that I think of it, I didn't get any symptoms until after that accident... *sigh* (seriously, how did I survive my childhood?? sometimes i wonder...) Sorry to sidetrack...
Again, I applaud the parents/family members on this board being their loved ones advocates.
i had headaches for almost a year before i went to get the MRI and was diagnosed. However, i had the same problems years earlier. That was around 2000 or so. The neurologist i had then never said anything about Chiari but i am wondering if that was because i had an open MRI and it didn't show it completely. My neck and back have always been sensitive for me when i would stretch and do other stuff but never to the point of pain. When i was rearended a few years ago, i had major muscle spasms in my back and we think it is possible that it exacerbated the Chiari and brought it to the forefront where it has been causing problems ever since. but i do remember reading that while Chiari is Congenital, there ARE cases where it is not and is actually caused by some kind of trauma. But yes, i believe it is mostly congenital though.
I was told that you are born with it. I was told I it last year on the 13th of April. I started having really bad headaches as well as dizziness and weird feelings in my head. They have gotten worse within the year. I wanted to have the surgery but due to the "great" presidents law, I am losing my insurance and I can not get it at this moment. What I wouldn't give for just a day without pain.
I wish your son the best and I would get it done as soon as possible.