My Daughter's Resent Diagnosis

My daughter has just been diagnosed as having Chiari Type 1 malformation.   We are still in the learning stages and completing all studies before getting a treatment plan.  Any words of wisdom would be welcomed.

Sherri Rice

1drmom 1drmom
5 Responses Mar 8, 2009

we just found out that my 4 year old daughter has it. not sure what type yet, will find out when we see the dr next month. when we found out it explained a lot from her not being able to look straight, the ringing in her ears, the clumsiness, she is adopted so i dont know much about her family. it is tough to see your child go through this.

I was also recently diagnosed with Chiari. I have symptoms of numbness in the hands and feet, horrible headaches, neck and sholder pain, memory problems and confusion, peeing problems, foggy thinking, sleeping for 12 hours a day, facial twitching and I'm sure some more things I forgot to mention. I am a teacher and have had to take a leave of absence from work. Just saw a neurosurgeon last week sho said the symptoms aren't the result of my chiari (I'm getting a second opinion). I was wondering if the CSF flow can be blocked while upright but ok when laying down. The doctor said my MRI showed no block, but I don't see how this can be. I would really like some more info and a way to make these doctors understand my problem.

About 6 months ago my daughter was having episodes of vomiting in her sleep and would wake up very lethargic afterwards...I became concerned and had EEG and MRI completed..The EEG came back fine and the MRI showed afew different things..One being a possible but mild Chiari Malformation...We were to follow up in 6 months for another MRI(which was scheduled for late november)..In the past month she has been having many episodes of dizziness and blurred vision...During these episodes she presents with a low grade fever but once the episode is over her temp is back to normal(very strange) In the last week she has complained twice of stinging feelings in her hands and legs...We just had another MRI done on Monday and waiting for the results soon...Has anyone else experienced this or have any suggestions? I would greatly appreciate it....

How old is your daughter? My son is 19 and he was just diagnosed on Oct. 8, 2010. He will have the decompression surgery within 2 weeks.

No wisdom here. I can only say that I'll hold a good thought for your baby. It must be so hard. I hope you have a faith in something. Take it one day at a time, try not to future trip. Don't let those nasty little Doctors push you around (God bless them all) but they need to realize that we listen to them, and when they don't follow through on stuff - it confuses us and we get testy, and we want to lash out because "you said you'd call me Monday with those results from the MRI I had last week"! I've learned that as the patient I need to realize the Doctors are only people too. And those that love me just need to love me for today, and not look or think about next year or tomorrow, those were never promised me. The only promise I hold is that my soul is infinite. And we will all one day be together again. Take care, and love your baby.