Chiari Malformation one: Brain condition Jenni Lee has been fighting

Helpful. Thank you

NOT everyone has the headache, yet the condition can be detrimental to daily living. My insomnia is no longer bearable.

I have type 2 an didn't start until I was in my 40's. Have 5 neurology disorders and now over an inch hole on the left side of my neck. Have 16 medical conditions and no cure for 4 of them. Disability barely pays the rent so surgery is out . Have uncontrollably twitches an after 10 years , the pain is moving into my arms. Neck and head has been popping for a while. I don't have headaches but quite often, it feels like knives going through my neck and head. My neck an head is slowly shifting left. Am donating my body to science because it is so rare

Great video

THANK YOU for doing this. I am watching from NY - Although I tune in to my own ABC News, I found you because I too have Chiari Malformation and I know exactly what you are going though. I had my surgery 10/10/16 with a near surgeon in NYC and I am like 70% better in that I do not have headaches like I did (I wanted to die from them) now I just deal with neck pain from possible CCI from surgery. MY neck hurts a lot lol I did not have this before surgery (the neck pain like I have now) but my horrible headaches that felt like there were bricks on my head and eyes are GONE!!! I hope you continue to feel better. If you need anything, please contact me <3 HUGS .....Thank you to the Dr. on here also who seemed to get it correct in every way which most NS do not.

Chiari Malformation has caused me blurred vision, sleep apnea, loss of memory, confusion, anxiety, stress, slurred speech, light sensitivity. I did a CT scan and they found that I have low cerebral tonsils, so now I'm just waiting for my doc to call and schedule my MRI. I do get the headaches sometimes.

I have Chiari 1 and syrinx. Very symtomatic from 26 yrs. CT showed nothing . 36 yrs i was sent for mri looking for pinched nerve. That's when they found 22mm drop and the syrinx. 😢

I wish this was more personal. The interview was just so statistical, as if there is shame in this. There’s not. The interviewer had the surgery... where’s her personal journey or experience. So doctoral.

Go see a Neurosurgeon? The problem is most insurances require a referral from your primary care physician and they will not do it. I had to INSIST after experiencing severe symptoms at 57 yrs old.

My nephew cat scan showed buddy chiari. And my nephew has had many symptoms sense 7th grade he is now in 10th grade has speech issues memory problems failing every class and seizures. This is all new to us but it may be our answer.

Wish I had known

My daughter was diagnosed at 15yrs old. She has had 3 brain surgeries. She is still sick Chiari can be a nightmare 😭

It is late in diagnosis due to lack of mri my daughter was not diagnosed until she was 31 was diagnosed as suffering from cerebral palsy

So basically if you pop up out of the blue with "chronic migraine" and ct scans show nothing, neurologist recomends no mri needed since physical test was clear, an mri still should be done to rule out chiari. I am 32 and now have migraines with a wide range of aura.

Agree, I was told by my neurosurgeon I would just have to live wit

DOCTORS DON'T KNOW NOTHING ABOUT THIS

My Chiari headaches aren’t nearly as painful as my menstrual migraines. They’re mostly in my neck and annoying

I have Chiari Malformation one .My doctor told me I needed the surgery and to not to worry he wasn’t into harvesting organs. Second visit he said he will have to burn some my brain off during . I haven’t had my surgery can anyone suggest one in the state of Georgia?

She's not living underground

My neuro wont listen