It's already been a long week and it's only Wednesday. I have felt terrible. I have a constant headache, pressure in my ears and head, sporadic seizures, and feel drained all the time. Monday morning I had to go into my neurologist and get hooked up for a 48 hour EEG with video monitoring. Let me tell you, that was fun. The same afternoon, I had to go to my dreaded neurosurgeon's office. I don't know if it was my head being wrapped up and full of wires, all the new symptoms, or the recent MRIs, but now they seem to care. The past 8 weeks, they haven't cared whatsoever, but now they want to call my neurologist to see what he is thinking. The nurse practitioner, who is definitely not on the top of my all time favorite people list, left the room to show the surgeon the MRIs. When she came back, she seemed as though there was something that needed to be said but wasn't. All she cared about was "When do you go have the EEG taken off?". I told her Wednesday and she informed me that they would be calling over to the neurologists office. I had a slight seizure during the visit so some of it is kind of blurry but I do recall her saying something about maybe the neurologist would want the surgeon to go back in and look around. They are still saying that he is happy with the decompression and the fluid will reabsorb on it's own. I just don't get it. I don't get why they just can't take the fluid out and see if it is causing any of these problems. It gave me a sick feeling in my gut. That same sick feeling when I know that something is up but haven't figured out what it is yet.
Tuesday went off without a hitch. No seizures but I felt like crap all day. I did manage to get some rest when my 4 year old would allow it. I wish there was some way to magically be better. I hate knowing that I have so many limitations. I want to be the best mom to him I can be, but right now I don't feel like that is happening. I try any way I know how to have some fun with him but it just feels like it's not enough. If this had to happen to me, why couldn't it happen when my son was old enough to truly understand what was going on. I know that it isn't my fault and there is nothing I can do about it, but I feel bad. It's just the type of person I am.
This morning, after being uncomfortable from the wires, carrying around the bag with the machine, having my head wrapped and burning up from it, and the 48 hour stalker, AKA the video camera, I was set free. We went in first thing this morning and got rid of it all. Luckily, yes it sounds weird, but luckily I had 2 seizures while I had the machine on, one on camera and one off. Hopefully it will show something and they will get some kind of answer as to what is going on. The assistant told me that she would get everything into the computer today and let me know as soon as the neurologist read it and what he wants to do.
It really has been a struggle the past few months. When I was originally diagnosed with Syringomyelia, I was okay. I told myself that we would deal with it and move on. Since August 1, things have truly changed forever for me. With everything else that has been thrown on my plate, it has gotten harder and harder almost by the day. The Syringomyelia, Chiari Malformation Type 1, degenerative disc disease in my cervical and thoracic spine,a protruding disc in my neck, episodes with pinched nerves, all the symptoms of the above, and high cholesterol. The list goes on and on. I have wanted answers for so long but I didn't expect all of this. Going into it, I really thought it would end up being something that could be cured and that I might have occasional pain from. WRONG!
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