Understanding Chiari malformation
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- Опубліковано 22 сер 2024
- Learn what a Chiari malformation is, how it is diagnosed and what types of treatment may help.
You can find out more about Chiari malformations in our booklet: www.brainandsp...
Our online support group, 'Chiari Malformations Group - A Space For You,' is a safe place for people to share information and support each other through personal experiences of Chiari. You can join our closed Facebook group here: / chiarigroupbsf
The Brain & Spine Foundation is a UK-based charity and here to support anyone affected by a neurological problem.
This is a fantastic resource, thank you for developing this
I’ve known for about a year or 2 about my chiari, along with having pots disease, which can coincide with chiari, it makes so much sense about why I’m having all these symptoms. Personally I have the headaches, neck pain, fatigue and muscle weakness, nausea, and insomnia roughly.
Type of Chiari doesn't necessarily mean severity of symptoms.
Chiairi Malformation is very hereditary.
Chiari patients should be warned about things to not do like running, anything that can pull down, epidural, spinal taps etc.
Are you a doctor?
@@ryanweston9677 Are you?
@@ryanweston9677 Talk to hundreds of Chiari patients.
You make valid points. The size shouldn’t exclude the symptoms.
@@ryanweston9677 I have Chiari. What do you know?
I was told by a neurologist there was nothing he would do . Yes , he refused to treat me . At least he let me know I had this condition . Minor lifestyle changes manage it for the most part , no more weight lifting or heavy lifting of any kind . Feels like someone hit me in the back of the neck with a baseball bat when it acts up . Not to mention when it gets throbbing ..... thats a different matter all together .
After two previous neck operations to fuse vertebra 3-6 I doubt I can find a surgeon to treat it when it becomes too much for me to handle myself .
I am a zipper head and had the decompression surgery 4 years ago. I consider it a success. I still have minor issues but most of them are much better. 💜
what were your symptoms if you don’t mind me asking? i’ve just been diagnosed today after i had an MRI for headaches, I suffer with neck pain/stiff neck and dizziness a lot of the time, terrified of the idea of the surgery
@@jessparker6875 it’s going to be ok first! I know how scary this diagnosis is. I had bad ringing in the ear and when I laid down I could hear the blood rushing in my body. I waited too long to have the brain scan but once I did things progressed quickly and as I said before the surgery was a success for me. The surgery took me a while to completely recover from but it was worth it. Before the surgery my headaches had gotten so bad that I was always nauseous, dizzy and couldn’t open my eyes. My neck pain was so bad. All those things are better for me now. I wish you good luck. If you are in the Atlanta Metro area please let me know and I will tell you who my doctor is. He’s awesome.
@@perijetton9275 Hi, thank you very much it means a lot, i’m actually in the UK but thank you anyways, i’ve had a bad week with dizziness and neck pain but i’m going back on the 13th March for a follow up on my diagnosis hopefully everything goes okay 😊
Do you care if I message you? I just had mine a couple weeks ago!
@@jessparker6875 I had all you the same symptoms you had. Plus I had really bad ring/whooshing in my ears. The pain of gotten so bad that I was having daily headaches with nausea, and I could barely open my eyes. I’m almost symptom-free now.
Even after having that decompression surgery 9 years ago, I am still struggling with the symptoms...
I think this is something people don't necessarily realise. Unfortunately, at present there is no cure for this awful condition. My symptoms are much worse now than they were before surgery.
@@bobtomlin3451 me too surviving with that condition... Doctors preferring to keep the sugar level and weight in control and also suggests to maintain exercise for the rest of your life...
Great video! Thank you for sharing!
😘
Diagnosed with Chari Malfornation 2 officially 11 years. Now adding Severe Spinal Stenosis. Was wondering if this is what led to a hole over an inch, on the left side of my head? Now have the xray proof. They want to do surgey but don't have the $$$. Am in constant pain. The twitches are shifting my head left. Started when I was 45. Went away an returned a third time in 2010
Disability would pay for that, if you're in the US
I had an Arnold Chiari malformation decompression in 1993. I was symptom free after the operation. During August 2021 I was in a motor vehicle accident and had a very bad whiplash. A started experiencing symptoms of Arnold Chiari after the accident. Wonder if anubody else was for years symptom free and then started with the symptoms years later.
Go back to your doctor get an MRI or CT scan, it is possible that your cerebellum has fallen and is again putting pressure on your spinal cord. It could be very serious.
The same thing happened to me. I was diagnosed when I was 5 (no surgery) and had minor symptoms up until a couple years ago. Now I'm 25 and 3 car accidents later and my symptoms literally affect my daily life in every way possible for the last 3 years.
I was diagnosed a few years ago.
Thank you for this!
I got diagnosed in 2018 with Chiari malformation, though now I’m kinda sure it’s type II rather than type I
I’ve recently started having new symptoms (after being able to pain manage for past two years), I’ve started having spasms in the middle and lower parts of my back. Plus also pulsating pain at the base of my skull. I do exercise, but rigorous ones seems to aggravate it, so I try to modify. And sometimes it could be sitting or not sitting. Has anyone with the same condition experienced anything like this?😕
And I also have a curved spine
i do, and dude my headaches are the worst. most of the time they start at the back of my head bc of all the pressure and they move towards the front and my eyes. it’s so bad. i was just recently diagnosed. but in june i have to get another mri to see if it’s gotten worse and i may have to get surgery :(
@@tiadewitt8482 Get well soon. Have you been treated?
I have this problem that causes me upon falling asleep my abdominal wall spasms to the point my whole body moves, waking me out of sleep.... Anyone?!!!
I had numbness over my hand and also lack sensation (abnormal) towards temperature, which continues to persist even after surgery done on 2018.
My wife is considering surgery for hers.
Did the surgery help you ? What symptoms are you still having since having the surgery?
@@JoshuaWilliams-tu8eb Get well soon. Have you been treated?
Nobody mentions psychosis as a symptom
Because it isn't one.
Hello namste very good video me indian Gujarat
Have doctors not known about this until recently.
Good job 👏🏻
Wow, only 41 comments on this after 3 years.
You would think it would be more frequently spoken of due to the pain felt.
Mine is 11mm but can’t find a Dr to help me an I think this caused all my nerve damage
How does lifestyle changes help with CM?
Hi, I am Sanjeev Mehta from Mumbai, India. In 2009 I hv been detected with Arnold Chiari Malformation/Syringomyelia Condition and was operated immediately for Magnum Decompression. Can you pl guide me further for future safety and Completely recovering from this Condition? Pl help.
Hello sir how are you now i have same problem and fmd+duraplastry+oc2 fusion done last one month back still how long it will take to recover
In my case, the base of my skull really hurts when I laugh hard.
Omg, I’ve the same. Before I knew it, I could not laugh that hard.
Same as me
Or when loud sudden sounds happen