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Chiari Malformation found via MRI at hospital, but doctor brushed it off...


Posted by Kelsie

Hi all,

 

I am a 26 year old female.  I teach at a community college and have no health insurance.  About three weeks ago, I started experiencing feelings of weakness in my right leg, only in the evenings.  About two weeks ago, I woke up and the entire right side of my body felt weak--leg, hand, arm, and face (including my right eye, which FEELS droopy, but is not).   I knew it wasn't muscular weakness, because I could still stand on one leg, lift weights, do yoga, etc.  A few mornings ago, I began experiencing numbness on the right side of my face, to the point that speaking became difficult.  I went to the ER and they did blood work (all normal) and an MRI, to rule out stroke and, possibly, MS.  The doctor came and told me that everything looked fine, but that I had a Chiari malformation.  He then told me it was nothing to worry about and NOT the cause of my symptoms.  He thought perhaps some compressed nerves were to blame for my arm/leg symptoms, and that my face was going numb due to anxiety.  


I came home and looked it up and was shocked to find that a vast majority of my symptoms are present with Chiari malformation!  

I have been prone to terrible headaches for much of my life and have always chalked it up to stress/hormones (maybe it still is...I don't know).  I have also had an odd "clicking" that felt as though it were coming from inside my skull when I ran/jumped.  I don't know if that has to do with anything, but it always unnerved me a bit. 

 

I guess I'm wondering...can Chiari symptoms present on only one side of the body??  My left side is completely fine.  The weak feelings on the right side are going away a little, but my right eye feels as though someone is standing behind it trying to push it out of my skull.  I'm also experiencing sensitivity to light and sound.  My mother thinks it's a sinus infection (she had one that made her face go numb and messed up her eyesight) and told me to take some Mucinex D.  I'm growing increasingly certain that my chairi malformation has something to do with this.  

 

Was my doctor wong to brush this off?  Should I find a new doctor or go ahead an follow up with the old one?  I would really like to try to find myself some health insurance before a firm diagnosis is made.  If the only treatment option really is surgery...I...I just can't imagine.

 

I feel very alone and frightened right now.  Will chiari kill me?  Will the symptoms rapidly get so bad that I lose motor function or my eyesight?  I'm terrified and poor and I feel a little angry that the doctor didn't even entertain this as a possibility.  

 

Does anyone have any advice as to what I should do now?

 
Answers (4)
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I would get health insurance ASAP or find out if you qualify for any gov't help.

I dont know about the one sided question, but I do know that you need to see a Chiari expert. They are few and far between but they understand the disease as to where other doctors say itis nothing.

 

Hope this was helpful

Dee Dee

Hi my name is Ashley! I was 16 when I found out that I had a savier Chiari Malformation. I had to have surgery to correct mine. It is very normal to have numbness and weakness in only one side of the body. My whold left arm became paralized in 4 months of when I started to feel tingeling and weakness. It is very important to see a neurologist. Once paralisis has occoured it is not likly that the surgery will reverse it. My neurologist had told me that if I started to feel loss of taist, Weakness on one half of the body or the other, Right or Left, Arms or legs toes or whole feet to report to the emergency line asap and or the ER. SO PLEASE TAKE IT SERIOUS! I am now 19 and simptoms have returned and more signs of paralysis are begining now. It is very dangerous to mess around with.
the chiari will worsen and it really gets bad. I would get a second opinion. It never hurts. The Chiari malformation can make you paralyzed on one half of the body or the other or maybe even the whole body. If you have any questions please feel free to ask me. I am here and my prayers will be with you
Hi!

You MUST seek a second opinion. Typically Chiari only affects one side of your body, so your symptoms seem to be right on. A syrinx can be a very serious issue; it certainly was for me. I was rushed into surgery a week after my diagnosis.

It is a fully curable disease - in that its ADVANCE may be stopped. However, if it is allowed to progress, it can do irrevocable damage. That being said, it is best to catch it as early as possible. I have read accounts of patients whose doctors told them it was 'manageable' or 'nothing to worry about.' In my experience, it IS something to worry about. It can become unbearably painful. Please go check yourself out at another neurologist/neurosurgeon.

That being said - start sleeping on your side, with your head well supported. The less tension on your neck, the better. I don't know where you live, but if you can, you should get over to Johns Hopkins hospital in Baltimore, MD. The doctor's name is Jon Weingart. He's the best of the best - the absolute leader in his field - for Chiari malformation. He operated on me. Though some of my symptoms remain, he kept me from dying or getting paralyzed. PLEASE get some insurance...everything is prohibitively expensive! This damn commercialized healthcare system is draconian.

Please don't hesitate to contact me. Though I won't post my phone number here, I will give out my email. Contact me that way, and I would be glad to send you my phone number so we can speak. stephan.guertin@gmail.com

Try to relax about it. Stress aggravates Chiari quite a bit. You'll find a way, and everything will be alright.

Cheers,

Stephan
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