Arnold-Chiari Malformation Support Group
Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain. Arnold-Chiari Malformation II occurs in almost all children born with both spina bifida and hydrocephalus, but ACM I is typically seen in children and adults without spina bifida.
So I've been seeing a neurologist for about 8 months now for various different complaints.
Unbearable Fatigue
Double Vision
Floaters
Muscle twitches
Weakness in arms and legs
Tingling anywhere on body
Dizzyness
Trouble swallowing
And other things i cannot even think of right now.
It has been getting worse and worse over the last few months and the doctor really hasn't been helping what so ever. Just blood test after blood test.
Then yesterday I went to the ER because I couldnt take it anymore. They called my Neurologist and he came to the ER. He didnt want to give me a MRI of my brain ( because he didnt think anything would be wrong) but my mother pushed it and they did.
After a few hours I was told I had Type 1 Chiari Malformation. The ER doctor said he was going to check with the NS to see if he wanted to talk to me about it and schedule a follow up. The NS told the ER doctor that it was not a concern and he didnt need to see me..And that the chiari was not causing any of my symptoms...
I was told to follow up with my neurologist and primary doctor...
Has anyone else had any experiences like this?
Or suffer from any of my above symptoms?
Its getting so tiring looking for whats causing this and its really starting to affect my daily life...
Unbearable Fatigue
Double Vision
Floaters
Muscle twitches
Weakness in arms and legs
Tingling anywhere on body
Dizzyness
Trouble swallowing
And other things i cannot even think of right now.
It has been getting worse and worse over the last few months and the doctor really hasn't been helping what so ever. Just blood test after blood test.
Then yesterday I went to the ER because I couldnt take it anymore. They called my Neurologist and he came to the ER. He didnt want to give me a MRI of my brain ( because he didnt think anything would be wrong) but my mother pushed it and they did.
After a few hours I was told I had Type 1 Chiari Malformation. The ER doctor said he was going to check with the NS to see if he wanted to talk to me about it and schedule a follow up. The NS told the ER doctor that it was not a concern and he didnt need to see me..And that the chiari was not causing any of my symptoms...
I was told to follow up with my neurologist and primary doctor...
Has anyone else had any experiences like this?
Or suffer from any of my above symptoms?
Its getting so tiring looking for whats causing this and its really starting to affect my daily life...
Don't worry about the ER Neuro reaction, he didn't want/couldn't deal with it, pay him no mind. Not the droid you're looking for.
Skip neuro, this is not their field. Your PCP should be informed and can help set up NS appt. You have a red flag symptom so don't dawdle. Red flag does not necessarily mean decompression surgery but begin treatment and halt progression.
Go to TCI patient education and watch the video's, well done and easy to understand.
In the meantime don't do anything that causes you to strain or jerk your head and neck. Called valsalva maneuver.
Take care and I hope this helps...props to your mom!