Unofficial Symptoms List ~~

[selmaS]

Ok...we know what most Drs will accept as a chiari symptom...but, we also know we have many more symptoms that r chiari related that fall thru the cracks...lets make a list of all the symptoms not on the Official lists.

[SarahNew]

My 4 yr old daughter was just recently diagnosed with Arnold Chiari Malformation. We had an MRI done for a possible neurofibromatosis diagnosis and found it. I was just wondering if these symptoms sound familiar.
*she says her legs are "busy" and she will just stand and not move them
*she says her eyes are "sparkling" which I have no idea what that means. Maybe they feel fuzzy.
*i feel like she might have a learning disorder because she has a hard time pronouncing words and remembering things are gets opposites and colors mixed up.
*when she is in the car she sits on her hands until they are numb. I don't know why she does that
* she has a lot of energy and falls down a lot. The neurologist just said she's klutzy but she falls A LOT.
* today she is complaining of jaw pain.
Any help would be great! I don't know how to make her feel better, which is frustrating for a mom!

[selmaS]

  Hi and  welcome  to  the Chiari  forum.

  Ah  yes,  validation  with  a DX  is  such  a relief and  we all  understand that feeling for  sure.

  Chiari is  not  easy to DX  since  we  can  present with a multitude of symptoms that come  and go ...Chiari symptoms cycle  so  it is possible  to feel  great for long periods  and then  have a flare....when  we go to   the Dr  we  and  they  do not connect all  the symptoms with having  one root  cause,  so  we go round and round  dealing  with them individually  which does not render  relief.....

  With  a Chiari  DX,  now  you need  to educate yourself on  it and ALL  related  conditions and  research Chiari  specialists  to  find the right  one  for  you,

  Know you  are  not  alone and  we  will help  answer  your  questions  the best we can,

[manda2866]

I was just recently diagnosed with chiari I malformation. I was actually kinda happy when I got diagnosed because I no longer feel crazy. For the past 7 years I have had multiple head scans and have been to multiple doctors and was always told it was just normal migraines and anxiety. The symptoms I have are odd headaches ranging from burning pressure in the back of my head to electric shocks through my brain that make me jump. I hAve Chronic neck and shoulder pain where I hAve to use a heating pad or have my husband rub my neck and shoulders everyday.I suffer from terrible dizziness that makes me feel like I'm walking on a boat and I experience falling spells where it feels like I'm dropping through the floor repeatedly. I also have numbness and pain that shoots up and down the back of my upper arms and a cold burning sensation on the bottom of my feet. I saw someone say on here that they do a weird hiccup thing and then burp and I do that exact same thing!! I have acid reflux and get trapped air in my chest constantly. I'm not sure if that due to trouble swallowing. I also have heart palpitations that I take meds for. I have pain and fullness in my ears that I thought was from my Taj but it turns out it can be from this too. Now I don't experience all of these symptoms everyday but they do happen frequently.

[selmaS]

  BUMPING up for a member

[selmaS]

  BUMPING UP

[disasterfullbeauty]

hey im new to this conversation but finding it so helpfull to know all this is not in my head. i relate to so much of it , u think six stairs is bad i cant even make my bed without needing a nap HALFWAY through!.