As some of you may recall, I was incidentally diagnosed with chiari in March. I spend an unhealthy amount of time reading about and researching chiari. Here are some of my most recent ponderings. 1) being that I was incidentally diagnosed in that I wasn’t ill or feeling bad. I have a defect in my sphenoid sinus and I am leaking csf… That should be encouraging right? That I may never have to have surgery? I am 35 and I have never been “sick”… Of course now that I obsess and over think everything, I have experienced some chiari symptoms from time to time but I think most healthy people do being that the symptoms are vague… Thoughts on that? 2) I am 35 and like I said, not experiencing severe or debilitating chiari symptoms. Do most people experience symptoms at a younger age than I am? And lastly, do you think research will advance even further in say the next ten years so that surgery may be less invasive or so that other options for treatment may become available? I would appreciate any feedback! Thanks!
Alana
I was in a similar position last year, in that my diagnosis was a complete surprise and an incidental finding as I was trying to track down shoulder pain while swimming.
Everyone in your position will make a different decision. Sadly, I don't think there is any way to judge which decision is perfect when. That said, I will explain my own experience and offer some guidance.
In general, many people seem to agree that surgery should happen if the symptoms warrant it, not if the MRI shows a problem. I did a lot of soul searching about my own symptoms. Many Chiari symptoms are easy to recreate if you just think about them. It strikes me as similar to someone saying, "Don't think about a pink elephant." If you are healthy and pretty asymptomatic, it can be hard to know if that headache is just because you didn't get enough sleep last night, and if that dizziness is just because you've been in the sun for a while.
Two things helped me decide to have surgery. First, I have a very tiny syrinx, so small, though, that it was unclear whether it was just a tiny anamoly from the way I formed in utero, or a symptom of the chiari. I had a nerve test, an EMG done, which showed that the syrinx had been damaging my nerves for at least a decade. It was not a benign line on my MRI, but a real problem. That test convinced me to schedule surgery.
I had to wait a few months for surgery. (I drive my kids around for hours every day, and so I wanted to wait for summer when the driving load is less of a problem.) In that time, I started to have worse and worse chiari symptoms. I was frequently light headed. This made the approaching surgery something I looked forward to.
I am glad I had surgery. I am quite healthy, exercise several times a week, have a small amount of neck stiffness as a residual symptom of surgery (which is helped by simply stretching, looking directly over first one shoulder and then the next).
I was 47 when these symptoms flared. As one NS explained, it was like my body was doing just fine with Chiari, and then, suddenly, gave up and said it couldn't cope anymore. Over a period of three to six months, I went from being extremely healthy (ready to swim two miles across a lake with no extra training) to a lot of time lying on the sofa. Lots of time.
IF you don't think you have symptoms, you are probably fine to wait. If symptoms do start to be a problem, you will know it! And, you can take yourself right to your NS for treatment. I can't speak to treatment advances, except generally, yes, treatment seems to get better over time. And the research starts to become clearer about what works and what does not.
I had a severe syrinx and was told that surgery was necessary to prevent paralysis. A frie d once told me once you stop questioning then you know it is time to have the surgery. Many people go a very long time with minimal to no symptoms.