Rhianna's Journey with Chiari Malformation | UCLA Pediatric Neurosurgery

Teenager Rhianna Wilson spent her senior year of high school in and out of four San Diego hospitals, seeking relief for her vision loss, leg pain and debilitating headaches. She was diagnosed with Ehler-Danlos Syndrome (EDS), a genetic disorder marked by overly stretchy connective tissue, but no one could explain what caused her worsening symptoms. Doctors encouraged Rhianna’s parents to consider a seeing-eye dog and enroll her in a school for the blind.

Her mother’s research led her to UCLA Mattel Children’s Hospital, where pediatric neurosurgeon Dr. Aria Fallah referred Rhianna for a stand-up MRI. The scan revealed a large Chiari malformation, a rare condition in which the brain slips downward and compresses the spinal column. Dr. Fallah removed Rhianna’s top vertebra and the back bone of her skull, creating more space for her brain and relieving her symptoms.

When Rhianna opened her eyes after surgery, she could see again. In less than three weeks, she was living like a typical teenager: driving, working, hiking and enjoying the active social life she’d missed during her senior year.

[Sophia-kwen]

Howdy everybody! I'll be sharing my story haha, I've had Chari Malformation for about 9 years! When I was very little I smashed my hand onto a parking lot and was rushed to the hospital, Only to figure out I had Chari, the surgery we did was a decompression surgery! I just turned 12 this year, the only symptoms I have at the moment is.. Struggles with swallowing, Vertigo, Paralysis, and major headaches or migraines and serious neck pain. I had to be that kind of kid who usually stayed inside and didn't do a lot of running or tag, Ect. I have Asthma, Dyslexia, Chari Malformation. Asthma combined with Chari Malformation.. Doesn't blend right with my body at all! But I am a strong survivor, and I will make it.

[ProfessorEyebot]

I was just diagnosed with this; waiting on my follow-up appointment to see if they want to go ahead with the surgery. I'd been suffering for YEARS with migraines, fatigue, joint pain, and more recently, muscle spasticity in my legs making it almost impossible to walk, and even seizures.


Doctor after doctor brushed me off with the tired old "oh it's just It was only very recently that I got into a good health center and they ordered MRIs. They found the malformation and diagnosed me immediately, and are even considering testing for EDS.


I've never had surgery before and of course it's a scary thought, but I'm just so beyond thankful and relieved to finally have some answers. Watching this and seeing her tear up at her own relief got me going too lol.

[emma]

I got diagnosed with chiari malformation when I was three and my mom got me the best doctor to help me. Now I am 13.

[evangelinepadua]

my daughter just had her second surgery last December. Now she is in the Rehab with many therapists. She’s now start walking with out walker or cane. Thanks to the Almighty .

[humasima]

I've had Chari for over a decade that i know of. People do not see the pain, that is 100% spot on. I can't believe all the useless doctors have never ordered a stand up MRI. I WILL be getting one now. No wonder why i'm better laying down huh? I'm both angry and happy. Thank you for this, God bless you.

[chellym]

EDS is also what I have and always knew about and just got told I have Chiari Malformation tonight, so I know your pain, hope you're okay now! Good on you for speaking out 💖

[humasima]

I've had 4 heart ablations for A-Fib, and all i ever needed was to be treated correctly for Chiari. And the heart doctors say...we don't know what's causing your A-Fib. And i tell them i have almost all doctors are dismissive of patients. What to we know right? Shout out to all of us with freakishly large brains, never give up, don't ask for help...demand it.

[Heverly]

I am now recovering from the same surgery. I've battled the symptoms for 9 years. I'm happy you made a video about this because I have days where I'm in pain all day. I had the same symptoms as well. Happy for you.

[StellaThompson-wz]

In October, my life completely changed. I had access fluid in my head which was killing me. I went to a yearly eye doctor appointment, and was sent to the hospital. They did an MRI and found out about the fluid. Then, on the MRI they saw Chiari Malformation. Luckily I didn’t need surgery for it. Then I was diagnosed with Albinism. My life has changed in the past year

[jessijuniper]

I feel lucky that I have made it to age 44 without symptoms, but by a stroke of unlucky luck, I fell hard down the stairs which prompted an MRI of my head. That’s when it was discovered. Every single doctor has been very supportive.

[FaithGraham-di]

I had the sugery almost a year ago. It took me 3 years of running tests to find out what was wrong. I had pain, tingling, numbness, crawling sensations, loss of balance and coordination, loss of spatial awareness, weakness, inabiliy to tell temperature, trouble swallowing. I had the progressive kind so I did surgery. It was a scary process but I preferred to try than risk paralysos. I am 47 years old. Now, my balanxe and coordination is back, can tell temperature, less numbness...but unfortunately still alot of pain. Sight did not improve. I can drive, I no long drop things or hit them over or lose my balance. Surgery was worth it...just wish the pain will go

[Rochelle]

I had to cry and have a full blown meltdown at the health center before the doctor ordered a MRI. And low and behold my migraines where not anxiety. It was Chairi Malformation.

[PeacefulThoughts]

My neurologist doesn't care about my diagnosed Chiari Malformation. She said, "surgery never fixes them and they only cause more problems" not only that but she didn't tell me I had it. A different doctor roughly 7 years later asked me why I wasn't getting scans on a regular basis for the Chiari. I was livid that the neurologist didn't tell me. I made an appt with her and confronted her and that's when she said surgery is bogus. Then she condescendingly said, "You. Have. A. Chiari. Malformation." Treating me as if I had forgotten and talked to me as if I was a child.

[aaronpotton]

I'm suffering from type 1 chiari malformation, been suffering for nearly 10 years now, neurologists told me that surgery isnt necessary but they dont see me day to day, the migraines are agony, wake up with headaches every morning, on the verge of losing my job, I cant play with my 19 month old daughter when I want, have to carry painkillers and other medications with me where ever I go, the vomiting, the loss of sleep, the dizziness and passing out is horrible. I'm only 30 and the longer I wait to worse I'm going to get. I now suffer from depression because if it all! I'm lost and dont know what to do, I just want to be out of pain.

[exploringwithbonniecasey]

I was recently diagnosed with Chiari Malformation and I'm waiting for surgery.

[chrissabrady]

😥 I too suffer I'm so happy for her 🙏

[rikkihurt]

I have surgery on December 7 for my Chiari Malformation. I had to fight for doctors to even listen to me or take me seriously.

With the epidemic of pain pills, every doctor just thinks you are there for one reason. They don't listen, they don't take you seriously.... It's a horrible situation to be in pain so bad you would rather end your life than face another day feeling the way you do... But the doctors refusing to listen are the ones that make you feel that way.

[QuattroRocket]

My baby girl (7) was just diagnosed with this yesterday, it was found by accident. We are reeling but a video and story like this is super encouraging ! Thank you for sharing.

[ilonabjork]

I have Chiari one but that doesn't stop me from having fun!

[ql]

wow my heart hurts for here she is so sweet. Im also so happy that she can finally get her life back. My 11 year old was just diagnosed with mild symptoms. Scared to death