chiari malformation help

[hDavis12]

Hi my name is Heather im 20 I was diagnosed with "mild" chiari malformation type 1 not to long ago and it seems as though as time goes on my systems only get worse right now I'm too the point I can't functionbecause my head hurts so bad ever day my balance is bad I haven't been able to eat with out throwing up in 2 months I've lost almost 50 lbs my hands an feet get a needle poking sensation then just go numb and I can't sleep anymore when my head aches get really bad my vision gets all foggy and spotty like someone shined a light in my eyes and im extremely sensitive to light and sounds now my dr put me on topmax for the migraines but it's not helping I'm suppose to be getting a spinal flow donenext week as well. On top of having the chiari I also have ITP. I guess with knowing some of my background do you have any suggestions on what to-do or what could help because I'm sick of being in pain and I don't think my dr knows what he's talking about because he told me that he didn't think Any of my symptoms where caused by my chiari because it was only mild .

[selmaS]

  Hi...I did reply to ur post in the Chiari forum....many of us with Chiari have GI issues....and have pain, if u ask me there is no such thing as mild Chiari otherwise u would not be going in for testing in order to find it....the big issue here is MRI's are the only way to locate this condition and they have not been around long enuff or used long enuff to DX this ...once they did, there was not enuff info on how to treat it and last each Dr uses his own way to classify it...mild, borderline etc and they use there own criteria to do so...looking mainly at the length of the herniation and not how it is affecting u and ur overall health.

Those of us with Chiari are prone to other auto immune and connective tissue disorders, so u will want a true Chiari specialist...see the Health Pages in the Chiari forum for a list of Drs for u to use to research Drs,....be advised u may have to travel to get to one.

[hDavis12]

Because ITP is a bleeding disorder where I don't clot properly surgery of any kind is high risk for me. And my dr neurologist believes that my symptoms are caused by something else because I only have a mild chiari whatever that means I'm trying to find a specialist here in Michigan but its vary hard there arnt that many and its driving me nuts because he's giving me all these meds that don't help and I still can't keep Any food down without throwing up he refuered me to a gastroenterologist but they can't get me in till june an in the last 2 months alone I've lost 50 lbs and I get the head aches every day sometimes I end up in the er which is a joke because they think I just want drugs and im faking it and I'm just at the end of my rope and I have no idea what to-do anymore

[boognell]

Have you and your doctor discussed surgery? I know members of my family who have the mild type, they might have occasional numbness/tingling. But others who suffered severely like you have had surgery with good results. I'm not saying all surgeries are successful but maybe it is worth talking to your doctor about it. Good luck and God bless.