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Hi I am new to the group, I just recently was diagnosed with Chiari Malformation about a month or two ago. I was referred to a Neurosurgeon who then referred me to a Headache Specialist. After going to the headache specialist twice, she put me on meds that did absolutely nothing to help and caused horrific side effects. I have made an appointment with the Neurosurgeon for the first week of April. I am super nervous to go but I really am hoping he can explain this to me a bit better than all of the previous doctors I have seen. Most of them have just told me "the chiari was an accidental finding, that is not the source of your issues" but then they later state that they do not know much about Chiari. I am frustrated because for over three years I have been trying to figure out what is wrong with me. for a year straight I did not eat any food and was barely surviving off of ensure drinks, doctors told me I was crazy, that there was no reason for me not to be able to swallow, and that my headaches were not correlated to this what so ever. Now I have been diagnosed with chiari but the number it is at is very low but these are my symptoms:
trouble swallowing, eating food
numbness in hands
loss of feeling in both legs
ringing in ears
now I know that may not seem like much but it has begun to ruin my everyday life, I can no longer do my everyday activities that I used to. I don't know if I will be a candidate or not for the decompression surgery but I am running out of options. I have taken medications, done physical therapy, and much more but nothing seems to be working. I am worried because I have read other peoples stories on having chiari who have had an unfortunate turn of events with it and I am very worried that if mine isn't treated it will become much more severe as time goes by. Anybody have any advice? or even if you think I would be a good candidate for the decompression surgery? or even tips on what I should bring with me to the neurosurgeon appointment that may be helpful. anything helps really. Thank you so much.
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