Hi. I am 23 and have had a rapid progression of symptoms due to my Chiari 1 malformation. Previously, I suffered from severe headaches and neck pain. More recently, the past two weeks... I have had light-headedness, dizzness, left eye pain, blurred vision, flashes of light, arm and leg numbness... overall brain fog... and probably a few other symptoms I am forgetting. I had an MRI a week ago which showed no syrinx, no posterior CSF flow (but anterior flow was okay), and a 6.8 mm herniation. I am meeting with a second neurosurgeon soon. The first neurosurgeon was unsure if these were all symptoms of Chiari, she said she doesn't deal with the condition much. My neurologist seems quite concerned. I am worried because I don't know if these are all symptoms... and I feel that if they are it is rapidly starting to take over my life. Is it normal for symptoms to progress so rapidly? My neurologist said something about increased pressure and disrupting CSF flow with valvasar (spelling?) movements.
From what I have read above, it definitely does sound like Chiari is the culprit in the symptoms that you are having. They are very, very familiar to a lot of us here. If they are seeing that you have no posterior CSF flow than it is good that they are concerned as this is proof that you have blockage of CSF flow. Did they see this on a regular MRI or did they do a CINE MRI (which specifically tracks your CSF flow)?
Different people progress differently...some have symptoms for 10 or 15 years that slowly progress while others like myself progress quite rapidly. Although, I thought I progressed quite rapidly until I started to think back to things that I didn't realize were significant that happened in my past like the back of my throat going numb when I was about 10 and at the same time I developed a constant cough that no DR could explain. Then there was the years and years of steady sinus headaches (or that's what I thought they were). So, if you look back, you may realize you did have some signs from before. Most of us that progress rapidly find that it is due to some activity or trauma...for me, I upped my exercise schedule and was running several times a week. Since I was already experiencing the headaches, neck pain and arm weakness, I think this just caused it to snowball. A lot of other people find that their symptoms rapidly progress after something like a blow to the head or a car accident.
The valvasar movements your NL is referring to is things like coughing, straining, bending over, singing, yelling...all those things that cause the pressure to rise in your head and this causes the Chiari symptoms to be worse.
My recommendation to you is to find a NS that DOES know about Chiari!! This is very important to do. Below is the link to our specialiss link which may gave you a place to start.
Hello and welcome! I am one of those that had a car accident start my symptoms that was last August and I have alot of the same symptoms that you complain of as well. I also have blockage posteriorly but not anteriorly. Right now I waiting on a surgery date.
I totally agree with Carolyn that you need to find a doc who specializes in Chiari. Have you had a fall, car accident, anything that may have caused your symptoms to suddenly start progressing?
Thank you both for your opinions. It is so good to have other people to talk to about this. I first learned that I had Chiari three years ago when I was in a car accident and had severe headaches. The past 6 months or so I have increased my exercise, and have been trying to run on the treadmill at least a few times a week. The past two weeks I have been unable to do so, because the pain is unbearable. I do remember early January falling on ice, and hitting the back of my head. I did black out for a moment, but I seemed to be okay. I am not sure if any of these things have progressed my symptoms, but I am kind of brainstorming things... definitely all of which I should speak to my Dr. about.
Sounds like it to me. I have not had the headaches with the cough etc. But the dizziness, fatigue, neck pain and numbness are all symptoms. I never thought they were all related until my diagnosis. I also have scoliosis and chronic fatigue and an overall rundown feeling. Mine was slowly progressing and the numbness was a new symptom over the last year. That is what got everyone's attention and got me an MRI. That and diminished CSF is what made me a candidate for the surgery. I am new to this and have a moderate case. I was just diagnosed in December and had the surgery just over a month ago.
@Carolyn- you have sinus headaches as well? That is interesting. I have had sinus problems and headaches for years. All of my docs say that is not related to Chiari, but I have never found anything to treat it. I have been considering going to a doctor who specializes in sinuses once I am over the recovery.
Yes, I have had them for years and sometimes they last for weeks. As the Chiari symptoms got worse, this was accompanied by a lot of facial pain. When it gets bad, my whole face hurts and it feels horrible. The only thing that would touch it is to take painkillers and decongestants constantly..which I am not able to do anymore. I am convinced that it is the Chiari b/c it does start at the back of the head I just never really realized it b/c once it moves up to my face, it hurts a lot more there. I truly believe that Chiari causes a lot of different headaches and that my "sinus" headaches are actually due to the pressure in my head.
Well being in a car accident and then having a fall like that, I think could have definitely got your symptoms going. Just a note...running when I had symptoms was a big mistake for me and like I said above, really snowballed my symptoms. It is quite high impact and causes your brain to bump against your skull and a lot of neck strain. I would recommend just walking on the treadmill and doing low impact exercises so that you don't exacerbate your symptoms.
It is nice to hear others opinions. I am still waiting to see a NS who specializes in Chiari... the NS I went to only said that I was a candidate for sx, but a lot of time sx makes the symptoms worse. This is all just very scary and confusing, because it seems like not many Dr's know a lot about it. I am just worried that with the rapid progression of symptoms I should not wait too long before getting answers.
I agree, I find that it is quite a balancing act....trying to figure out if you should seek treatment vs your symptoms getting worse. I run into a lot of Drs that don't know a lot about Chiari too and it is frustrating. That's why the best thing you can do for yourself is to educate yourself so that you go into these appts with the knowledge to ask the right questions.
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