Possible Chiari. please help me

Okay. So for the last month I have been having strange symptoms out of nowhere and have visited the emergency room twice. It all started with my lips going numb and pursing up funny when I talked. Then the entire right side of my face started going numb as well making my speech slurred like I was drunk. Then the symptoms branched out a bit. My hands go numb and claw up when I write at work. My forehead goes numb leaving my face expressionless. My throat goes numb and I can’t even swallow my spit, let alone eat or drink. My nose feels like its being pinched off and I sound stuffed up at first, then sound like I’m deaf talking. I am facing all these scary symptoms and I see a neurologist soon. The er I stayed overnight at gave me a referral. Can anyone tell me if they’ve had similar symptoms? Also been having massive headaches, been confused, out of it, dizzy and off balance. I am very scared and feeling alone. Please help.

Hi Jessica,

I've had some of the symptoms you're experiencing, such as excruciating headaches, lightheadedness, balance issues, trouble talking, parts of my mouth going numb, my head not feeling right, and pain and numbness in my neck, shoulder, arm and hand. Having trouble right now just typing this because my arm feels weird. I've had several other symptoms too. Sounds like you may have Chiari... can't say for sure though.

Whenever you go to see Neurology, see if they'll do an MRI on you. I have a feeling they'll find something.

Don't worry, you're not alone. I've only been a member of this support group for maybe a few weeks, and I've already felt like this was the right place to be. I've received a lot of helpful advice, as well as just some general good wishes.

Wishing you the best of luck on your journey!

Hello Jessica! First I want to say welcome and your not alone. I have some of your symptoms dizziness, headaches, confused, numbing of my lips and hands, off balance and swallowing issues. I was diagnosed with chiari this January. Of course Im not a Dr. but I definetly want to encourage you to have a MRI of your brain as soon as possible so a professional can see exactly what’s going on. Have you had an MRI of your brain yet? The MRI will detect chiari. There are many wonderful knowledgable people here who will help you as much as they can your in the right place! I learned everything I know about chiari here and got the guidance to know were to go and what questions I needed to ask. That’s really good your getting in to see a NL soon. Let us know how you are doing I know it’s scary but your not alone were here take care.


I am with the group only a short time but it is extremely helpful! I have other issues and went out of work on disability about 2 years ago from the medical field. I agree with Emmaline, while your symptoms could be Chiari, the definitely could be something else as well.. Your symptoms were enough for the ER to keep you overnight so they were concerned and monitored you. You don't say if they took a CT or a MRI of you while you were there.. A good ER physician would have with someone with your symptoms! I have had problems for several years, seen by a WONDERFUL neurologist but was put to being tension Head aches and migraines. Then I messed up our checkbook BIG TIME and got really worried. Was told I could see a Neurosurgeon if I wanted. This came after my cardiologist sent me to a electrocardiologist for something else and while he did his exam and eval asked me if I was ever evaluated for Normal Pressure Hydrocephalous or Chiari? I told my NL and he then set me up with a wonderful NS with whom I am under evaluation with at this time. I am just in the testing period and he has already told me that he will have more than one diagnosis for my symptoms when this is over. I just had a Lumbar Infusion Puncture but was unable to get results because I had so much surgery in my lumbar spine he said there was no flowing fluid. He is going to review everything again and call me next week to tell me what we should do next. One thing I know he is ordering is a CINE MRI which will show the spinal fluid actually moving in my brain. He is however, concerned about other problems and that is why he wants to check my pressure. I might be admitted for a drain to be placed so they can monitor me. That would be the normal pressure hydrocephalous. I was also tested for MS, stroke, blood clot, ischemia by my NL with a MRI that showed a SMALL Chiari malformation. He said THAT was NOT my problem. My nephew also had surgery for a Chiari Malformation 2 years ago but his was very large. My NS told me it is not the size, it is the symptoms and whether or not the spinal fluid is getting around it. Please, I think the world of my NL, he is very smart but you need a NS and need to be evaluated for several things that could be causing your problem..Your brain is a very complicated and intricate body part that controls the other parts of your body. When there is a problem inside of your head it can be many things. Get yourself thoroughly checked out! Ask questions here, I have learned in a short time how helpful people are here. Good Luck, God Bless and let us know how you do! Lily

I did have a ct scan done on mothers day and an mri on Friday but they said it was normal. But they are still sending me to a neurologist so I’m hoping they do one thats more thorough and not so rushed. I’m positive I have something wrong with me. All I can do lately is cry :frowning:

Jessica, I’m sorry you are going through this. Ask for a copy of the radiologist report…you need to read it for yourself, and get a copy if the MRI too so you can look at your own images and judge what you see. There is no hard and fast rule on when a Chiari malformation gets diagnosed, some radiologists need to see a 5mm herniation, 10mm, or even more before they will mention it in the report. The radiologists may call it tonsillar herniation or ectopia instead of Chiari. Get familiar with recognizing what a herniated cerebellum looks like so you can evaluate yourself. If you have Chiari an NS who specializes in Chiari is the way to go.

I believe the nl that I was referred to is good at recognizing chiari from what I’ve been told. These symptoms are so scary. I just want answers. I think the hospital sent copies of all my tests to nl. Hospital did blood work and all my levels were good for vitamins and nutrients. They tried to tell me it could be stress related but I am not under much stress at all, in fact my life finally started to turn around and I was offered an assistant management position through another company doing work similar to what I currently do. I just don’t understand any of this. Its frustrating to not know exactly what is going on, I feel like a prisoner in my own body. The symptoms are only getting worse as time passes. I wonder if it has anything to do with the car accidents i’ve been in this year :frowning:

My Chiari symptoms were brought on by a car accident.

So my accidents could be the cause? :frowning:

Here’s an article…


Many of us have had some whiplash, head injury, or other head/neck injury spark symptoms.

Link isnt working for me for some reason :frowning:

Sorry- I do this from my phone and it challenges my technological skills.

Search “trauma” in search bar
Several articles

Thanks Em

Thank you!!

Hi Jessica,

I had most of those symptoms and still do I literally have a binder now of all tests, results, reports, labs, MRIs etc all together like my own little chart because the truth is most hospitals and doctors I have been too don't communicate with each other like they should. I have had to call 2 and 3 times sometimes to get the results of my tests sent to me. Every MRI I have had they have asked me if I needed a CD for my doctor I always reply yes that way I have it and when getting second opinions its helpful. It makes my appointments go smoother and definitely made it easier on the neurosurgeon when I got there to see what was going on. I have a Chiari Malformation and out of no where started having symptoms weird almost growing pain like soreness in my arms at night that just got worse. Was sent for MRIs in December and then additional tests and MRIs afterwards. As of December 26, 2013 I do have a 11mm herniation with Spyinx in middle of my neck also guessing I have one done about where my bra strap is since there is the same kind of pain there as well although not confirmed. I have headaches, dizziness, trouble swallowing sometimes, balance issues and tingling pins and needles pain up and down my arms and legs for hours and hours a day which is like the pain when your arm or leg falls asleep and then wakes back up but hurts like crazy. The hurts like crazy part stays for 4-6 hours at a time. I'm now medically managing it with prescriptions until by surgery date the end of June but on bad days they don't do much and I'm exhausted all the time. I'm scared to death about the surgery but at the same time can't wait for all the symptoms to get better or completely go away so I can get back to being great at being mommy and employee right now I suck at both because I'm always tired and can't remember a thing. Just this week I apparently don't process the alarm clock correctly I have 5 set and not a single one wakes me up I hear them but seems in my dream like my mind doesn't process hey time to get out of bed until I'm already late. I've tried a bunch of different tones and volumes all the way up and nothing seems to work.

Hi Jessica! Nice to meet you! No, you are not alone. I'm very new to this condition as well, but have found lots of help and support.

Good article, Emmaline. Makes you wonder if an accident exacerbates things. Thanks for sharing!

I would make sure you get a copy of the MRI and CT on a disc to bring with your to your doctor's appt. Sometimes the radiologists who read those aren't the best at finding everything. It's a good idea to to get your doctor to give it a second look!