So, one of the most interesting things I have learned is that while Chiari is not the cause of all of my issues, it makes all of them a little worse. However, the interesting thing is that until the Chiari became symptomatic, I have very few serious health issues. I had an injured knee that is still functioning on grace and prayer, I also had the issues with my deviated septum and the fallout of needing my tonsils removed. Otherwise, I was active, healthy, and living my life.
After the initial diagnosis, I had a few restrictions. Seventeen days later at the neurosurgeon when the diagnosis was confirmed and surgery was scheduled, we went through a long list of things I would probably never enjoy again. Here are a few of those things:
- horseback riding
- weight lifting
- sing opera
However, once I began to heal, I began to hope. I was getting stronger everyday, I got a gym membership. My memory was failing but I had enough family and technology to keep things together. Then I started getting weak on my left side and from there, much has gone wrong.
The seizures have the largest impact on my life right now as they are quite uncomfortable and they are the source of the memory outage. at first the seizures were small enough to where I was beginning to doubt my doctor. Then my stepdad saw me have one in my sleep, and I had one in the pool a few days later. Now I was not allowed to swim, drive, shower in the house alone, and a few other things.
Ended up in the ER with pulled muscles from my ribs to my hip on the left side. The night seizures are violent. They always end in pain, confusion, and long periods of dead sleep.
How do we come back to Chiari? The headaches. When the headaches are worse the seizures are worse. The motion of the seizures can make the headache worse. It is a cycle I really don’t wish to see play out. We cannot say what is causing the seizures until I get my study done and maybe at that time they will be able to figure out what started them. However, if they can’t, I still have to move forward. So much of what has happened and what is happening aggravates symptoms that I live with almost every day. My herniating tonsils lead the charge against my body and whatever is left up there is still angry about losing to the while-coats. I did not realize that people lived in pain until I lived in pain. It is quite different than any other pain. I know other pains will go away, even if they are acute or last a few days or weeks.
The headache sits. At times heavy and at times light. It is difficult to accept that this might always be how it is. I may be in that percentage of people who get worse after decompression surgery and it isn’t anyone’s fault, it is just how it turned out. I have spent the past two years in therapy trying to figure how to accept is and it is truly a ginormous pill to swallow when I have to say that we really have a few words and no idea how they are connected. I just know that in the end, whatever happen will probably disturb my headache and I won’t like it but I will likely survive (based on my survival of every previous incident).
I hope that if you are going through a process that seems impossible, try to make sure you have really accepted the range of possible outcomes. It is almost impossible to move on in life when we fight the truth, even when it is painful and it hurts. In the end, the truth is what it is whether it is accepted or not. It is harder to deal with a lie and heal and come to a new normal.
Sometimes you will have to open wide, take the life medicine, and drink a LOT of water afterward!