I decided to start this blog for three reasons. First, so I can keep family and friends updated on doctor visits, results, etc. It'll probably work better than telling each person individually. Second, it'll help me track symptoms, progress and other things. Lastly, for other people that have Chiari that might have input, or that can benefit from what I post.
I have a rare, congenital brain defect called Chiari Malformation. This means that the bottom part of my brain is protruding into my spinal canal, which causes pressure and messes with the flow of cerebrospinal fluid. This can cause a syrinx to develop in your spine (build up of spinal fluid in one spot). Once the damage is done to your spinal cord, you can relieve the syrinx (with the surgery) but the damage is usually irreversible. Thankfully, I do not have a syrinx. But I could develop one eventually. They say if your brain is protruding 5mm you are considered to have Chiari Malformation. Mine is 26mm into my spinal canal. Yowsa!
Here is my MRI and an example of a normal brain and a brain with chiari...
Chiari can cause all sorts of symptoms that are different with every person. Mine include daily headaches, tons of pressure in my head when I exert myself (laughing too much, coughing, getting up too quickly, or just moving the wrong way), dizziness and vertigo, I deal with nausea on a daily basis (worst feeling ever), fatigue, tingling, numbness in legs and feet, constant ringing and pressure in my ears, shooting pains in my head and face, feeling like I am going to pass out, difficulty swallowing, digestive issues, feeling like I am going to fall over, problems with my vision... I'm sure there are many that I'm forgetting to list.
I do have good days and bad days. Some days I only have a few symptoms that only last a short period of time. Some days I feel like I've been hit by a truck and I'm just so exhausted and sick that I can't wait for the day to end. Unfortunately, I've had more bad days than good days lately. You may not always see it on the outside but I try my best to fight through the symptoms and enjoy the day.
I was referred to a neurosurgeon who insisted I needed surgery. The most common treatment for Chiari is a decompression surgery, where they remove part of your skull and sometimes the first vertebrae, and sometimes even remove part of the tonsils to allow for more room... Of course, anyone facing brain surgery would get a second opinion. Which is exactly what I did. The second neurosurgeon said that I could just monitor it and treat the symptoms if I really didn't want to get surgery. He would also like me to get some other tests done to make sure some of my symptoms aren't being caused by anything else.
It is quite confusing getting 2 different answers when you are dealing with your brain. It's not a very easy decision to make. And of course, Chiari Malformation isn't a common thing with definite answers. No one is really sure about anything; there is no universal diagnostic criteria and no universal treatment. You could see 4 doctors and probably get 4 different opinions. You can talk to other people who have Chiari and each story is completely different. Some people are so glad they went through with surgery because the feel 100 times better, some people wish they never did because their symptoms got worse, some people don't even have a choice because they have developed a syrinx, some people have had to get the surgery 3, 4 even 5+ times (because it wasn't done correctly or continued to get worse), some people recover from the surgery in 8 weeks, some people are miserable and take 9 months to recover.
So, what's a girl to do? Take the chance and go for the surgery in hopes that I will feel good again on a daily basis, only to possibly become worse for the rest of my life. Or, not take the chance and just deal with the symptoms that have become a part of my daily life and risk the possibility of developing a syrinx. Neither option sounds great to me. So for now, I will go get the extra tests to rule out any other causes of certain symptoms.
I'll be getting an abdominal CT scan next week... I get to drink that yummy barium mixture... ick...They are doing this to make sure that my digestive issues may not be caused by anything else.
That's it for now, I might do a few short posts to keep track of symptoms, but I'll be sure to update after I get the results of the CT scan sometime in the next week or so.
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