Saturday was Jenni Lee's first day back at KVUE after being diagnosed with Chiari Malformation one, a brain disorder that is more common that many people think.
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
I have to work the creative side of my brain to find comforts, comforts that are painful for others in my creative classes (dance, sports, yoga) but if I don’t push myself daily I get sad and twitchy. I wish I could ask you to dance with me. It’s been one of my only lights.
I have it too, I’m in so much pain and have all your symptoms, plus more, it’s ruined my life, my relationships with family and friends, I can barely take my dog out without tripping over leaves. Come on leaves? Yep I’m a mess!!
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
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.
Hello, did you undergo surgery, and how are you doing now? I suffer from the same disease and symptoms of the disease. My question is, how are you doing now, and how is your memory, has it improved?
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.
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.
Chiari headaches feel like they are at the base of your skull and neck . I shudder just thinking of the gnarly ones I've had .. writhing in delirious agony on the floor wanting to die so it would be over .You can tell a Chiari sufferer from the tone in their voice when they talk about it .. you should get an MRI to rule it out but if you do happen to have it , you can start to learn how to manage it .. I was diagnosed 20 years ago and decompression surgery recommended but I've lasted this long without it getting out of hand .. touch wood ( had an MRI today looking for syringomyelia .. I'm way overdue I reckon )
Chiari headaches aren’t really in your head they’re super weird and are at the very base of the skull mostly in the neck and shoulders. But before I was diagnosed all I ever had were migraine like headaches. It’s weird
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?
