I have just been diagnosed with chiari 1 malformation. Been having problems for over a year but no one would take me seriously. They seemed to think it was all in my head. Lol. Turns out they were right. I am here because i am curious if anyone has similar symptoms. The worst being a feeling in my head like my brain is going to shut down. The best way to describe is when the lights flicker during a thunderstorm then suddenly come back on. Anyone else have that. Or constant ringing in ears. Keeps getting louder but never stops.
I had that. I was also sick for more than a year. Doctors told me it was psychological, told them to prove it lol. I had ringing in my ears so bad that I constantly felt like I’d just come out of a rock concert.
How long have you been having symptoms? Have you had the surgery. Sucks when nobody believes you. Makes you feel very alone
I have just recently been diagnosed with chiari 1 as well. I went to the neurologist last week (actually, I saw a PA - I don't think they believe my condition is serious enough for me to actually see the doctor - but that's another story). I am having the near blackouts like you describe a couple of times a week. I feel like I am going to black out, then a split second later I am back. I've not had the ringing, but I am almost completely deaf in my right ear. From my research, the ringing is a common symptom, though.
I became sick in October of 2009 and went until May 2011 before being diagnosed. I had decompression surgery on Sept 30 2011. I was symptom free for a little over 2 years, I’m having some symptoms now but we aren’t 100% sure if it’s Chiari related or not. I just recently lost my apartment and roommate because the roomie couldn’t and wouldn’t even try to understand what I’m going through. It’s rough.
That is why these forums are important. No one believes you at least at first. You start feeling very isolated. You start questioning your own sanity. Sorry about roomie. I pray good things ahead for you. It is nice to here from someone who understands what you are going through
This group keeps me strong. All the lovely wonderful people who unfortunately are going through the same hell but we have each other when others disappear.
Yea i know the feeling rebecca. Just thought i was getting old at first. Now it is like brain mis firing
Saw gp. Imagine will have to see neurosurgeon after mri. Which i am going to now v
Hi Razzle51! I Saw Terra Figland at Mercy Hospital in Des Moines. She is the PA for Dr. John Gachiani, who is a neurosurgeon. While she did step out of the room at one point to discuss my situation with him, I did not see him directly. Terra told me that she didn't think that my symptoms were due to Chiari because I did not have the "classic" symptom of severe headaches. She did order a spinal MRI to determine the flow of spinal fluid, so I guess I'll just go from there. If she and Dr. Gachiani choose not to believe me, I will find a Chiari specialist. I'm starting my search on that in the mid-west. Looks like there are some in Iowa City, which is a little under 2 hours away from me.
Joy who did you see ? See a Neurosurgeon ..... I sent you a message . I am in Sioux city