I spent most of yesterday in bed because I was so sore and my brain was telling me, "No more, Val! No more!" I had run myself ragged again which is very easy for me to do. I have to live within a daily envelop of energy and if I am unwell or if the weather is poor or if there is something exciting going on (say a flood!) that takes up all of my energy and zaps some for the next day. I was looking at the date today and realized that I had passed up my two-month anniversary of my surgery without even realizing it. It was on the seventh of July! The surgery seems like it was so long ago. It wasn't because I have only two inches of hair to prove it! Quite a few of you have written me or asked me what my surgeries were about so I decided to tell everyone in this entry and celebrate today for two months of being so much healthier than I was the last five years!! Sounds crazy because I just had the surgery, but when you have alot of cerebral spinal fluid on your brain taken off and the swelling gone down, it is just amazing what kind of energy you get back and, wow, the brain works again! It actually thinks sometimes! The picture above, which some of you may recall seeing in my beloved sister, Krissy's, journal was taken the day after my surgery. There is sweet Chelsea with me. She came and stayed for six days with me. She had nothing to do. We were in Baltimore and if any of you have ever been to Baltimore recently, it is a very dangerous place for an 18-year-old lovely girl. So she had to stay in the hotel the whole time. She never complained once. This was the week she decided to come live with me.
What were the surgeries? I guess I will start at the beginning. My first surgery was 1 1/2 years ago (Feb. 2002). I had a suboccipital decompression, craniotomy, and laminectomy of c-1. This was for Arnold Chiari Malformation Type 1. What, eh? What did she say? Boy, I have had to learn some interesting concepts and some things about the brain that Iwould never, ever have thought. Basically, though, they took out a little bit of the skull and made room for the brain that was pushing through and they took adhesions off the brain, and made the hole (foramen magnum) that the spinal column goes through bigger... yadda...not a surgeon. The second surgery was for pseudotumor cerebri. I received a ventriculo-atrial shunt. Chiari (Kee-are-ee) to put it in simple terms is usually congenital and is when your brain does not have enough room within the skull and is pushed through (the foramen magnum) into the spinal canal. It is measured in millimeters. Most people start getting symptoms within a couple to 5 or ten millimeters. I was at 22 millimeters when I had the surgery! It was astounding and pretty rare to see that extent of herniation. At that extent you can usually find paralysis and sometimes death. I was very lucky that I did not have a stroke! So, having this for years and years and not knowing what it was, has caused me alot of physical and emotional pain. Since all of your bodily functions pass through the spinal canal and are run by nerves and chiari pinches those nerves, alot of my bodily functions were affected and still are today. I spent many, many years thinking that I would find whatever it was that was making me "see double and triple" visually and hurt and feel like I was walking around in "pea soup". It took the doctors so long to figure out what was wrong because when I was first sick, as a child, the MRI was not invented yet. As I got older, I was already known as the anxious child and perhaps this was "anxiety and psychosomatic". Grrrrr....that was so awful for me to be labeled psychosomatic. Then as an adult, they said everything was my fibromyalgia, but I knew differently. It was found on an eye exam when my vision started failing as these disorders cause swollen optic nerves and blindness. Now, the second surgery, for the shunt, was much easier than the first surgery. It had much less healing. They placed a shunt from my brain to my jugular vein. It takes the excess CSF fluid from my brain and dumps it into my jugular. Most people have it dumped into their abdominal cavity, but I have had too many surgeries there already. I had to have a shunt put in because the first surgery alone was not enough to take care of my most meanacing symptoms and I still had migraine headaches and swollen optic nerves and back pain and hip pain and a stupid swollen brain! Now, my fatigue isn't quite as bad, my brain allows me to think a bit better, my headaches are about 50% what they were, my eyes are alot better, and well, the best thing of all is that the doc saved my life and my eyesight!! What could be better than that!!