My daughter is four and she was diagnosed with Chiari's after she started having absence seizures. The neurologist and the neurosurgeon both say they are completely unrelated, but I am not sure. There are other symptoms that have cropped up, and the doctors keep just adding "problems" to her list saying none of them are related to each other at all. I was wondering if anyone can verify for me if they have found information that links them to Chiari's or has experienced them as well. They are starting to really interfere with her life and I can't get the doctors to do anything, since "they aren't Chirai's related." Here is the list of thhings I am concerned about: absence seizures, eye twitching, extremely severe migraines, problems with speaking (i.e. wanting to say milk, but can only make her mouth say juice, or having periods wher she only talks in jibberish), running with her legs flailing outward, but only sometimes, and stomach aches bad enough to have a four year old turn down candy on a regular basis. Any help people could give me would be highly appriciated!
Dear Alannas Mommy,Hi I am fairly new here but,I just wanted to say that I have an 8 year old daughter who was disagnsoed with severe Chiari 1 Malformation 2 yrs ago and she was misdiagnosed for many years by irresponsible dr's who never took the time to diagnose her properly ,and if my mother and I hadn't taken her to a Neuro dr here she maybe would be paralyzed or deceased by the time we knew she had the Chiari ,because her NS said if we hadn'thad decompression surgery done on her when we did she would have been paralyzed the Chiari was cutting her spinal cord and the results of damage could have been devastating and permanent ,although my daughter is special needs because of her delays things could have been much worse for her if we hadn't insisted that the Dr's do more testing to find out what was going on with her medicly she would have much more severe damage,so If you as a mom know something is wrong don''t let the Dr's tell you there is nothing wrong or these things are unrelated because often they are not unrelated Dr'sjust don't know enough about Chiari to diagnose it especially in kids so don;tgive uo until you get the answers you both deserve,so good luck and God Bless you both.
I don't know much. Have the same issue with my daughter, lots of symptoms that they say may not be due to the Chairi. I can understand it. YOUR DAUGHTER'S symptoms seem well within the realm of possibility!!!!
Any way you could get them to refer you to the Children's Hosp in Chapel Hill? Don't know how the neuro dept is but the place has such a great rep. My BFF down in Wilmington makes the trek over there often instead of using the local hospital. As a matter of fact, local docs tell her to do so.
THE most important answer is to find another physician! If they aren't familiar with the disease (very), are in over their heads (which they rarely admit), or most importantly - you're gut doesn't feel right - start looking around for someone who does know what they are doing. If you're in North Carolina, check out Duke. I used to work there and they are a regional center of excellence, along with Chapel Hill as Gma7938 said. This sounds harsh, but remember...there is always a bottom of the graduating class in every medical school, so if you're not liking what you're hearing (especially with your child), you da boss so you deserve to be comfortable with what your hearing. By the way, I agree with you. two great neurosurgeons have told me that all of those things you list could be symptoms of CM. Since it's the brain, which controls every aspect of your body, it can manifest symptoms anywhere when it's not feeling well.
Docj said:
THE most important answer is to find another physician! If they aren't familiar with the disease (very), are in over their heads (which they rarely admit), or most importantly - you're gut doesn't feel right - start looking around for someone who does know what they are doing. If you're in North Carolina, check out Duke. I used to work there and they are a regional center of excellence, along with Chapel Hill as Gma7938 said. This sounds harsh, but remember...there is always a bottom of the graduating class in every medical school, so if you're not liking what you're hearing (especially with your child), you da boss so you deserve to be comfortable with what your hearing. By the way, I agree with you. two great neurosurgeons have told me that all of those things you list could be symptoms of CM. Since it's the brain, which controls every aspect of your body, it can manifest symptoms anywhere when it's not feeling well.
I still feel like we need to do more. There is no way I should have to spend hours on the couch in a darkened room holding cold compresses to her head and the back of her neck while my other five kids tiptoe around the house so as to not make any sound that will make her feel worse (they are amazing sister and brothers BTW). This is NOT normal, and it IS affecting her life. So far several people have told me to go to Cleveland clinic, which is only about 4 hours from me. How do I get in there though? It's another state and she's on Medicaid. I feel so lost and confused.
The nuerosurgeon we have now is the one who admits he doesn't know everything and anything is possible, but that he doesn't know what to do because text books tell him one thing and Alanna's body tells him another and he doesn't want to make the wrong choice for her. He would rather be cautious. I appriciate his honesty and frankness. He is a lot better than the old Nuerologist and nuerosurgeon we had. The nuerosurgeon saw her once and said, yup Chiari's and sent us home, no follow up, no explanation, I learned everything about it online. The nuerologist just treated the seizures and said, Oh chiari's? Not my problem or field.
Hi Alannas Mommy,
You have some great information posted. Please know we are here for you & your daughter. The symptons do sound like Chiari symptoms to me. Unfortunetly we have to pursuade our doctors at times to stop and actually listen to us. The symptoms are so numerous and differ from person to person. I will be thinking about & parying for your daughter & your whole family !!
Tracy Z.
Gma7938 said:
Any way you could get them to refer you to the Children's Hosp in Chapel Hill? Don't know how the neuro dept is but the place has such a great rep. My BFF down in Wilmington makes the trek over there often instead of using the local hospital. As a matter of fact, local docs tell her to do so.
I live in MI. Where is Chapel Hill? I've heard great things about the Cleveland Clinic, which is only four hours away too.
My daughter has had all kinds of stomach issues. We continue to be told that it's not related to the Chiari, ....too much of a range of symptoms to be the Chiari ...... Chiari wouldn't 'look' like that. I've decided that I probably know more than these doctors, whose Chiari experience is probably all from a book. Now we just keep going to different doctors until one says what we want to hear. The ones who aren't concerned with knowing more than you do, the ones who are open to learning, the ones who aren't concerned with being 'right,' the ones who care, are the ones who listen. At least I have more confidence in my own judgement now. After watching my daughter's wide range of symptoms come and go, and come and stay, I am quite sure that ANYTHING neurologically controlled is FAIR GAME.
Hey:) Where did you find this information? Do you have a link?