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Okay, I really don't know where to start this. I don't know if I should post this here, or in multiple boards, seeing as I'm not sure what in the hell is wrong with me. A few things first though:
1. Diagnosed with Chari Malformation Type 1 when I was 10 years old. This found while an MRI was performed on my spine.
2. Diagnosed with Scoliosis before Chiari was found. My spine started to curve when I hit puberty.
I don't EVER remember having symptoms from my chari, well, except the curving spine. They decided to operate on me anyways. I had a dural placed in along with a slight shaving of my skull, at least this is what I remember. I was young and my mother, having suffered an aneurysm when I was 13, she can't remember much of my surgery's either.
After my Chiari surgery, I had no issues. I was slower atheletically, but that's it. My spine didn't stop curving after the Chiari surgery, so I had scoliosis surgery...I had harrington rods placed in.
This was 17 years ago.
In all of these 17 years I have NEVER had issues with my Chiari. A headache here, a headache there...but that's about it. Oh, and the occasional bad gag reflex. I was a cheerleader, worked out, basically jumped around my whole life. Traveled a lot, partied a lot, I mean...I was doing a LOT! No problems!
Last year, after I moved to France, I started feeling...odd...shaking, headaches, etc. Well, I decided to quit smoking too (10 years heavy smoking), and that was ROUGH! But I managed! Yay!!! I was quite stressed though last year. First year of marriage, living in a foreign country, learning a totally new language. Not to mention the fact that I was living in Paris during the terrorists attacks...so, I was a bit on edge for awhile whenever I would ride the metro or be in large public places. I've noticed a few symptoms really started in January, first being a weird heart beat, then a lot of headaches, and now a weird dizziness EVERYDAY. But it wasn't until 2 months ago, when I started exercising again, that they seemed to came out of nowhere, especially the dizziness. I do NOT have vertigo. Things aren't visually spinning, nor is my head, but I FEEL dizzy in my head. It seems to radiate from the back of my head to the top. It's like when you squat down for awhile, then stand back up and you get that head rush/dizziness. I also have this VERY strange sensation at the back on my neck, in the middle between my shoulders and base of my skull. It's like a heavy pressure, but also feels a pulling sensation. When I get the headrush, I get the weird pressure and pulling sensation at the back of my neck.
Now, how many times do I get the head rush? ALL. DAY. LONG. I'm not joking. It comes in waves when I'm standing, and when I move my eyes to look around BAM! Or when I barely move my head, BAM! Typically when I look down it starts too. I even feel it when I sit, and sometimes when I'm lying down. And it definitely happens when I'm walking. There is this weird jolting through my upper back and neck. Wanna know the funny thing?...If I hold my head in my hands, wear headphones, put my hair up in a ponytail, drink a little bit of wine, or even when I'm brushing my teeth or hair ... this sensation seems to be muted. I still feel it a little, but not as much. That's REALLY weird. I know it sounds strange, but this is the truth.
Another strange symptom is a weird pulling behind my left eye. It's like a pulling, and then it goes down into my nose...like the sensation where you're going to sneeze? Kind of like that but not so harsh.
Since January, I have also noticed a weird skipping in my heart. It feels like my heart wants to jump out of my chest or struggles to beat properly. It does it at times that make absolutely no sense. Like today, I bent over to grab my purse and it happended for a second. Or when I lean over to get stuff out of fridge. Sometimes while lying down too. This seems to be more frequent.
As for headaches, they seem to be slowing down but I still get them every other day.
So, here are my symptoms in full:
- Headaches, accompanied by a sharp stabbing pain at the top left side of my head.
-Pulling sensation behind eye, which spreads through my cheek bone and down to my nose. Happens more when I'm more active.
- CONSTANT head rushes/swimming feeling at the back and top of head. This happens when I'm just standing there, moving my eyes around, when I'm sitting, sometimes when lying down. DEFINITELY when I'm walking around. I can feel my footsteps vibrating up to my neck and then a head rush/swimming/dizziness starts. Sensation is muted/dull when holding head in hands, or leaning head into palm. When wearing headphones, have my hair in a ponytail, brushing hair or teeth or when a little tipsy from wine. Sometimes even touching my head makes the head rushes stop for a moment. I kind of feel like I'm glitching at times too
- Weird heart palpitations/jumping. Happens very randomly, heart feels like it's about to jump out of my chest and feels like it's struggling.
- Pain at the top of back, in between shoulder blades. Really annoying.
- Sometimes I have some pain in legs or hands...
- Feels well in the mornings but after 30 minutes to an hour, symptoms start.
I am 40 pounds overweight (because I quit smoking) and I know this is bad for my harrington rods; I try to stay away from gluten, I WAS stressed a lot for a few years (during uni and dealing with a long distance relationship) but not again until recently when these symptoms became horrible. I'm scared. I'm upset...and my poor husband doesn't know what to do. We moved from Paris to a smaller city in the West of France, and well...things just became so crappy now. I'm so upset...I don't know if this is my chiari or if there is something else going on. I want my life back!!!
I have had an MRI of my brain, and the doctor said he saw nothing...then again he wasn't a neurosurgeon. He said everything seemed fine with the rest of brain...so now I have been scheduled to see an ENT, have an X-ray on my spine, and to get a blood test for diabetes, thyroid, etc.
Does anyone EVER feel these symptoms...? Anyone?
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