5 Years

Five years ago today, I had brain surgery.

It’s funny how even after 5 years that doesn’t sound any less crazy. I have done a pretty good job of hiding those memories away, the anxiety, the recovery, all of the unpleasant parts, in the very back of my mind. I rarely access them because it wasn’t a particularly pleasant time. I’m a completely different person than I was 5 years ago and so I look back upon that day almost as though it happened to someone else instead of me. Yes, I have the same scar as that girl, but I am a completely different person.

Most of the emails I get from other people with Chiari Malformation always ask me the same questions. First, they ask if I had the surgery (yes). Then, they ask who my surgeon was (he’s retired, sorry). Then they ask how I am today and if the surgery was worth it.

I don’t have an easy answer for those last questions.

I am better today than I was 18 months ago, I am worse than I was 4.5 years ago. I would argue I’m better than I was pre-surgery in most ways. I can laugh and cough and sneeze without feeling like my head will literally explode from the pressure. My balance is pretty average these days and my left hand has pretty good dexterity and strength, though if you measure it, it’s definitely not quite up to par. I don’t have nystagmus anymore and I have days without headaches. But I do still have them. And a few other holdovers here and there.

Was the surgery worth it? Maybe. There are just so many unknowns. Would my Chiari have continued to progress if I hadn’t had the surgery? Maybe. Would I have been able to tolerate pregnancy and deliver Elijah without a c-section? Maybe. Would I be where I am today? Maybe. I can’t say for certain if it was worth it, because I don’t know what the alternative outcome really looks like.

I can say that there were some benefits to the surgery. It helped confirm the career path I was on and have now completed. It has allowed me to connect with and have more compassion for my patients. It has improved my quality of life in some physical ways and has connected me to other people like me, which has further improved my quality of life in a more abstract way.

Yes, I still have headaches. Often severe ones. I am not without symptoms as I had hoped, but they do not inhibit my life like they used to. I’m working, I’m caring for my son. No one I work with knows about my medical history because they don’t need to- because it doesn’t have an impact in the way it once did. If it weren’t for the scar, most of the time it would be as though it never happened.

But it did. And if I was faced with the situation over again, ultimately, I think I would make the same decision, but I wouldn’t make it lightly this time either. Though I realize that not everyone would I agree, I like myself and my life more now than I did then. Much has changed in 5 years, and for that, I am grateful.

2 Responses to “5 Years”

  • I also had surgery for Chiari – I find it’s rare to find others! I had mine 10 years ago and have a similar experience. Still have headaches and it wasn’t perfect, but as time has gone on, the headaches are fewer, the balance is better and I’ve quit throwing up at the drop of a hat (that was my fun extra-special symptom). I don’t think I asked nearly enough questions the first time and, although I’d do it again, I would have really appreciated being able to do that. It wasn’t at all the surgeon’s fault, but the root issue made it so that I just wanted it to stop and couldn’t remember anything he said through the haze. A catch 22. That said, I’m glad you talk about it. There wasn’t nearly enough internet to resource in 2002 and it’s not a common enough condition to just run into folks on the street. I’m grateful for you!


  • Litenarata:

    I just found out today via Facebook that an old elementary school classmate’s little son is having surgery next week for chiari. I don’t know her well enough to feel comfortable asking detailed questions about how he’s been doing, but reading your blog the last few years gave me a lot of insight I wouldn’t have had otherwise.


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I'm Katie, a 30-year-old, wife, mom, former teacher-turned PT, who also had brain surgery in November of 2007. This blog chronicles my daily life, from mundane to crazy, often with far too much detail. Sit down, get comfortable and stay for a while.
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