stage 1 of chiari malformation does it get worse

[lollypop28]

type 1 chiari malformation, does it get worse and is it heredity?

[selmaS]

  Hi and welcome to the Chiari forum.

U r quite right, to a degree...u can acquire low lying tonsils which many refer to as Chiari , but it is not a true Chiari Malformation as that is the malformation of the skull and  u can not acquire that...only the herniation.

May I ask do u have Chiari and have u had surgery?

[Jessi_C]

Chiari type 1 is the only type of Chiari malformation that can be acquired via an automobile accident, head trauma, etc.

[selmaS]

  HI and welcome to the Chiari forum.

It is important to get copies of ALL testing that has been done, the MRI's and CAT scans on a disk and request copies  of the reports as well....it is possible it shows chiari but far too many Drs consider it an incidental finding and not much more....but it can  and does affect too many of us.

It can also be found in families too...so since he has a family member with it,this should be looked at more closely.

Chiari symptoms do cycle, so episodes where these symptoms u mention occur can be Chiari as we have had a few members with similar issues.

I had what are called Drop attacks....standing one minute, the next mid fall...and can not react or brace myself or call out....Afterward I was very nauseated and all over unwell....

As u mentioned we are all different so u can not base it on me or his cousin, u need to get copies of the testing and have yet another Dr review it for u.

[SJobe]

Hi.  I am a very concerned Mom.  My 25 year old son has been having what I call "episodes" of losing consciousness.  He has learned to know when they are coming on and tries to get to a place to sit down. When this happens, his speech becomes slurred and his cognitive skills pretty much shut down.  Afterwards, he is exhausted and sleeps for hours.  He has had CAT scans, MRI's and every type of monitoring test that he can have.  Although the Doctors notice that 'something' is definitely causing these episodes, nobody knows why, or even what they are for sure.  In my quest to find answers for him, I reached out to some family  members. I found out today that one of his cousins was diagnosed with Chiari Malformation. After hearing this, I immediately started researching it and although there are some notable similarities, every single case is so unique that I can't really get a feel that "this is it".  I'm beyond myself with worry and my son lives 2 hours from me.  Does anybody know of, or have symptoms similar to my son?  I'm desperate to help him find answers. God bless, and thanks so much!  Sherri

[crissiepoo]

did he get this resolved? i know it's been awhile! i am looking thru posts, I've been suffering from an array of health probs. i might have a suggestion about something im onto.

[selmaS]

  The clinical trials, may be an option for u...it is the NIH in MD and they do trials on those with Chiari, this is not some new surgery it is a way to track it and know what the long range results are.....Dr John Heiss is the Dr in charge there and well known in Chiari circles for knowing a lot  and is well experienced.

Do look up the link using the search this community feature and type in clinical trials.....

[LaurenWelch]

I had Medicaid from march to sept for my aneurysm and they dropped me bec my husband got a job. He only makes $10 an hr and we have a family of 5. I tried reapplying and was denied. They gave me an mri and told me I had chiari and that was it. I haven't been tested for anything else. The secretary for my neurologists ofice called me once she learned my Medicaid was dropped and canceled my future appointments.... Seriously... So now I'm just trying to figure out what to do. I'm a stay at home mom to my 3 kids no job. Just really need some help. Thank you for responding.