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Could i have chiari malformation?

My brother had teathered cord and had to have surgery for it, i have always had a bad back and neck, ive had x rays of my neck and i found that my neck was straight instead of curving back. I had an mri of my neck and a neurologist i saw had looked at it and said he saw a small line (not sure what that means), refuring to chiari, but did not think it was the cause of my symptoms. i am only 15 and i am feeling well enough today to use the computer so i thought i would start doing some research.

Ive always had headaches from time to time but never this much, I noticed new symptoms starting to appear about 4 months ago and old ones accuring more often and it seems like they are getting worse very quickly.
Atleast 4 times a weak i get very bad headaches, with my head pulsing, vertigo, ringing in the ears, extreme sensitivity to noise, and i can even see the pulsing in my vision where every pulse appears as a quick blurriness or sometimes a pulse of faded vision.
But my vision is always kind of faded now. i see black dots in my vision like you do when you do not eat or drink enough water. i feel very lightheaded and sometimes if i even sit up i feel as if im going to pass out.
ever since this started my heart has been beating hard (not meaning fast). and i often have extreme discomfort in my chest with beats at random feeling like its struggling to get bloodflow or possibly skipping a beat.
A few days ago i woke up with a headache (as i have been lately every morning), but with my heart beating very hard, my head was pulsing even harder now that my heart was beating harder. i could now feel the pulse through my whole body and every beat was making my body shake.
My mom took me to the emergency room but all they did was give me migraine medicine, which helped only my headache, not the pulsing in my head.
By the time i left the ER my heart was still beating very hard, maybe even harder (this was not the first time i had experienced a hard heartbeat as i do often and more frequently but was the worst ever). While leaving my vision was extremely poor and sensitive to light and my ears were ringing with sensitivity to noise.
About two minutes after getting in the car and on the way home i lost my vision and hearing completely. my face went numb, and i had the most extreme discomfort in my chest i had ever felt. I was very cold and when i felt my face, it felt as if i had been in a freezer it was so cold. My vision and hearing slowly came back after several minutes, my heart continued beating very hard though. My vision was very fuzzy and my ears were sensitive and ringing.
My heart didnt stop beating hard all day as i was just laying down, every beat was still shaking my whole body and i could feel the pulse in my face, my parents felt my face and they said they could feel it too. Also while laying down i realized i was arching my back while laying down, like it was tightening up. i didnt think much of it but it was uncomfortable so i tried to lay on my side most of the time.
That evening i felt like everything was getting worse so i went to a different hospital again.
Once checking into the ER i was so weak and dizzy i could not walk. I still could not stop arching my back and once i layed down in the hospital bed i realized my chest was very tight like i had been working out the day before, my legs started to tighten as well. This got very extreme fast (first time i had experienced this). I could not stop flexing my whole body, it hurt so bad i was screaming. The nurse injected me with valium and it helped for a little while but the 'cramping' soon came back and this happened about 2 or three more times where they had to keep giving me more.
The whole 7 hours i was there none of my other symptoms had gone away.
Doctors do not know what is going on, it seems like they have given up. Yesterday took a four hour drive to see a neurologist but he was no help.
I noticed symptoms at first about 4 months ago but they were no where close to how bad they are now. I found myself having to stay home alot during the summer becuase of this and now it is so bad that i cannot go to school.
The headaches i get are the worst headaches i have ever experienced, i have been prescribed vicodin and sumatriptan which don't always make them go away enough to not be excruciating. They can last anywhere from a few hours to days and with them it is very hard to sleep.
About a week ago i thought i was feeling well enough to finally go longboarding with my friend. This did not go well at all, I found myself walking most of the time becuase with the activity, my heart was just beating too hard and i had the discomfortable 'struggling' feeling. I tried ignore it at first but as they kept getting worse i had to stop.
Also i have always had a very bad back, i get soreness throughout my whole back and its the worst in my neck and upper back. In my neck i get craming, stiffness, aches, and soreness.
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Avatar universal
okay thanks
Helpful - 0
997898 tn?1303734864
glad to see you made it over!  your other post didn't mention about your brother and i agree with selma....have your mom make an appt. with a chiari specialist.  they will order an mri of your brain and spine.  with the information you get from that, you should know what's up and how to progress from there.  glad you did the research and welcome to our chiari family!
elizabeth
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the Chiari forum.

WOW....u gave so much info...many of us may take a while to respond to much of what u said as it may take several attempts at reading ur post to get it all absorbed....as chiarians we do have cognitive issues and the longer the post, the harder it is to read it all.

I will attempt to get much of what u r asking.

First have ur parents request copies of all ur MRI's and the reports...going forward, request copies of all MRI's and tests along with reports.

Many of ur symptoms do "fit" chiari...but, there r many conditions that share symptoms...so u do need the testing.The fact ur brother had Tethered cord gives u a higher chance of having a related condition like chiari.

U will also want to rule out TC, Ehlers-Danlos, syringomyelia, Hashimoto's, pusedo tumor cerebri.... we are prone to have a few things going on at once including DDD, bulging disks and stinosis.


I hope this helps some

May I ask, was ur brother's NS a chiari specialist?
If so, that may be a good place to start.

"selma"
Helpful - 0
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