Chiari Malformation

[kagekowalski]

I have Chiari Malformation and had corrective surgery for it when I was a minor. My surgeon cut open the back of my skull and shaved out a piece of it to make room for my enlarged cerebellum. I have had a small scar on the back of my head ever since where hair doesn't grow. The good news is that the surgery was to my knowledge a complete success, so I have saved myself from my predestined future of slowly becoming paralyzed (my doctors told me that the worst side effect of Chiari Malformation is becoming paralyzed as you grow older due to spinal fluid buildup).

Another interesting note: a lot of people with Chiari Malformation don't realize they have it until harmful side effects begin to show. My doctors caught it before any side effects manifested because I also have Torticollis (Malformation of the sternocleidomastoid, which is the muscle that runs along the side of the neck). When being tested for surgery to correct my Torticollis, my doctors found the Chiari Malformation, and they refused to operate on the Torticollis until the Chiari Malformation was fixed.

To this day, I still have not fixed my Torticollis. The surgeon who was going to fix it for me no longer performs that surgery (I wasn't told why). I've undergone therapy, which has helped to an extent, but it can't permanently fix the issue. I pray to have it fixed some day, but so far I've failed to find a doctor who is willing to fix it.

Being born with abnormalities outside of your control sucks horribly. Take care of your bodies, everyone 😊

[flatfoot]

In 1988, at age 37 years, i was diagnosed with Chiari Malformation and had surgery to correct the problem. The neurosurgeon enlarged the hole in the base of my skull and “resected part of my brain (I it was the cerebellum and attached it to my inner skull. Also, during the work up for the surgery, my neurosurgeon found cerebral fluid in my spinal cord and inserted a stent in my spinal cord. All was good for two years and in 1991, I started having severe headaches, vomiting and some motor function problems. My general practice doctor notified my neurosurgeon. Within a week, I was on the operating table, again. My neurosurgeon drilled a hole in the back of my to drain cerebral fluid and ease the pressure on my brain. The neurosurgeon said when he drilled the hole in my skull, the cerebral fluid streamed across the operating room. The neurosurgeon ran a stent out of the back of skull, under the skin, down the side of my neck, down the front of my torso, ending in the area of my appendix. During recent check ups, a neurosurgeon noted I have a low volume of cerebral fluid in my dome. Back in 1991, no adjustable valve existed to control the flow of cerebral fluid out of my dome. I’m 72 years old and thankful for my first neurosurgeon and my GP. May they Rest In Peace.

[justinflocchini]

Chiari malformation is a living nightmare. I had decompression surgery and partial removal of my c1 sep 9 2020. Surgery was successful but that’s about it. Have three herniated disks in my neck now on top of dealing with the chronic pain/discomfort that I have no control over. To anybody else dealing with chiari stay strong and know you definitely aren’t alone.

[amywalker]

Thank you for doing this video. I just found out 4 years ago I suffer from this, the constant struggle from daily headaches are very stressful

[lissajedi]

Thank you for sharing this! My hubby was diagnosed with Chiari 2 in 2000. His brain stem was herniated 2 cm. First surgery was classic textbook decompression, but the opening in the skull was made too big, and his brain started to slump after 6 months. Found a specialist, and got a titanium mesh put in to support the brain. This is such an unknown condition, and not a lot of people understand it or how serious it is.

[shebabristow]

I’m so glad you’re covering this subject and there are many comments with survivors! I watch Dr. G., Medical Examiner and found out what this is, only after the fact. Sadly, in many people it is not caught because they are not believed or mis/under diagnosed and the result is no longer compatible with life.

[stacymiley]

I just had my decompression surgery 3 yrs ago. Worst surgery ….or recovery I’ve ever been through. I’m still dealing with the side effects. This is a fascinating video. Thank you so much for showing this

[asailorswifeinct]

I am fascinated with these videos. I took A&P in college and loved it. This is much more informative.

[Cripples]

I have Chiari as well as many others here, thank you for spreading awareness about it and thank you to the donor.

[egrytznr]

Thanks for doing a short about this, I was diagnosed with Chiari Malformation Type 1 about a year ago I'm 36. This is such an awesome and informative channel, keep up the good work guys.

[CalmWithTheWorldAtLast]

Yay- You finally made a Chiari video! I’ve been asking for as long as I can remember because my daughter and I both have Chiari and it’s so important to be able to share the information and awareness to others x

[swissmiss]

I love your anatomy model and lessons:), so nice to see everything on a realistic model! This way everything sticks so much better in memory!

[ratiounkn]

I get these headaches sometimes that start with the back of my neck feeling tight then it creeps into the back of my skull. It’s debilitating, every heart beat goes up my neck and explodes into the back on my head. Thankfully not often, few times a year. This made me think of it, that is right where the pain starts.

[calestaiezu]

I recently found out I had a chiari malformation. I had horrible migraines since I was a teenager. I had been told for a long time that I had been exaggerating how bad my headaches and migraines were! I just recently got an MRI done in my late 30's and found out I had one. I haven't had a decompression surgery yet because I've had to live with my symptoms for so long I have sort of had to adapt, so unless I have an increase in my symptoms, my neurosurgeon said he would rather I didn't do the surgery.

[lillisa]

My daughters and I have this, thank you for shedding some light on Chiari. It actually causes a lot longer list of issues, But I won't get surgery for mine as I was told you have a 50/50 chance of it helping, and in a lot of people it creates new problems. I am very happy to hear about the people it has helped though ❤

[krystenpouchet]

This answered a question I had in another video. Thanks so much for these lessons!

[marlannakennedy]

Loving your channel. Everyone I've watched so far are correct. Thank you for correctly educating others.

[jenyknitter]

I have chiari malformation and so does my mum. I was excited when I saw this come up! A wonderful explanation!
I get headaches constantly and have trouble swallowing some foods as well

[accurrent]

My therapist has Chiari Malformation, but she had surgery to fix it when she was younger. She wrote her thesis paper on it, too.

It’s really nice having her as my therapist, because she has the same disorders as me (ADHD and OCD) and it really helps

[terence]

I was born with Chiari, and I had to have two surgeries to treat it. The first was to remove a piece of the skull as is standard. however, as a complication, I developed hydrocephalus and had to get a shunt installed as well in a 2nd surgery. it was known I was born with something wrong, however the jury is still out on what actually triggered it to start the severe headaches I began to get. I also got severe double vision and was clumsy. when I was five, a combination time of my sister being born and getting the chicken pox probably added enough stress to set it off. this was back in '88. cat scans showed nothing, and an eye doctor noticed issues and suggested an MRI and we went from there. Reading about people who were diagnosed late in life is surprising to me. This video was great to put things into perspective, thank you!