Chari Malformation 1

[Regina41]

I have Chari Malformation 1....7mm...headaches, short term memory loss, pain all over my body, pain down my neck and to the muscels my right shoulder blade.
Doctors here in Temple Tx seems to not really care...as they say we will treat the symtoms...thanks now im addicted to vicodin and somas.
I want tthe surgery, then rehab to get off all the pain meds...is this to much to ask.
Im running out of choice...hurt all day OR......

[selmaS]

Hi...yes, there r several that have seizures from chiari, not everyone with chiari will have them...and some have developed epilepsy post op....

We do have a chiari forum here on MedHelp, I hope u join us to share ur experiences and support.http://www.medhelp.org/forums/Chiari-Malformation/show/257?camp=msc

   "selma"

[kscott512]

One of the things I can't seem to get a straight answer from my doctors is-Do Chiari I Malformations cause some people to have seizures? I was diagnosed with a Chiari back in '03. Never before then did I have any type of seizure activity. After an accident that "jarred" the Chiari, I began to have mild seizures,sometimes as many as 2-3 a day,then sometimes I'd go for months without any. Are seizures a common symptom/side effect?

[Dr Sharma]

Hi there. I understand your present predicament and empathize with you.  In chiari malformation 1 there is herniation of cerebellar tonsils and is a congenital malformation. Surgical treatment like minimally invasive transnasal procedure may relieve symptoms. You need to repost your query in the chiari malformation forum seeking for doctor’s advice on it. Also, see help from expert forum of neurology for opinion. You need to consult the neurosurgeon in your hospital for opinion on surgery. All the best and take care.

[Londres70]

Post in the Chiari Malformation Forum.  They are very understanding and helpful.  I, myself, was told I might possibly have a Chiari Malformation 0, but the NS could not give me a definite yes.  My problems are mild compared to alot of other people, plus I am not so sure if it is even Chiari's.

You must find a NS or NL that is an expert in this area, because not too many are.  I think that forum has a list of specialists.