There is no really significant new information. Recovery continues at a steady pace. Here are the highlights:
I've been to see 2 eye specialists. Both find some visual losses in nerve transmission and processing. They think it is related to swelling along the optic tract. One doctor says that, even though the surgery was on the blood vessels in the dura, it still has an impact on brain structures much further away. This disagress with at least one neurologist, but seems reasonable, and consistent with the actual results. There is no estimate of when or if I will gain more vision, though there seems to be some optimism. My vision processing is improving with time, and my other brain functions are beginning to speed up. I actually feel almost up to speed for several hours a day. If I try to do very much, I hit a wall of exhaustion. I understand this is due to the fact that my brain's neurotransmitter chemicals are used up, and the nerve cells are not regenerating them fast enough. Intense visual environments wear me out really fast.
I've had some swelling in my neck. It also feels like there is some swelling around the base of my skull, leading to headaches and a slow down in brain speed. Sometimes my neck becomes almost too stiff to move. This is a new developement, and doesn't seem to be related to improvement or increased awareness. I'm having a doctor check it out. I think it's causing spasms in the blood vessels in my brain, which would explain the headaches.
My emotions come on quick and strong, then die away just as fast. I understand this is caused by my brain stem becoming faster and more active, but the higher functions in my brain are still a little slow. The higher functions regulate and dampen the raw emotions that rise from the brain stem. Sometimes I can sense the dampening effect kicking in a second or two after the feelings first come up. Othertimes I feel an intense emotional response to something, and am suddenly completely over it in about 30 seonds
I still feel like my left side is being operated through some kind of remote control. There seems to be a delay of a fraction of a second in receiving sensory data, and getting my left arm, hand, leg, or foot, to respond. I'm in control of my side, but I keep finding myself thinking that my left hand is some kind of robotic device controled through some kind of interface. Something, like swelling or scar tissue, is affecting the nerves to and from my left limbs. That makes them seem like they are not a part of me. In fact, when I try to draw a picture of myself, the left arm and leg are off the edge of the paper.
There also seems to be some kind of limitation on the way my right and left brains communicate. If I close my eyes, I end up using that robotic left hand to figure out what I'm touching. Sometimes my left hand seems to do things without my conscious awareness of using it. Especially when I'm having trouble speaking, my left hand tends to come up and start making motions and gesture. It's like it is getting access to the language area of my brain, when my mouth isn't. I suddenly see it moving around in font of me, and want to slap it with my right hand. The right side of my brain is telling it what to do, but my language is in the left side. The two sides aren't communicating well, and so seem to work a little bit independently at times. That's my understanding of what's happening. No one seems to know what is causing the communication problem, except that my MRI last September showed some swelling in the corpus collusum, which is the communication bridge between the two sides. It may still be swollen or damaged.
People are telling me that I'm beginning to make more sense, seem more organized, and am much more awake and observant. It sounds like I have come across as pretty scatter brained in the past. As much as I can remember, I was totally unaware of any of this. I thought I was always making perfect sense, and functioning pretty well despite everything. I'm told that when there is trauma to the brain, if it involves the back right side, (which is my case), the brain's ability to evaluate itself is compromised. People who loose vision on their left side (right rear brain function), also loose their ability to realize they are missing something there. They literally do not believe they have a blind side.
Now, I know about and complain about the blind spots and lack of vision there. And I was amazed by the way the brain fills in the blind spots, long before I was told about that. I do have areas to the far left through which I can see. Other areas don't have clear vision, but I can detect that something is there. Something like a car coming from my left is too big to disappear completely in one of the blind areas. That's why my brain can fill in the whole car. Same thing with people, bicycles, and children. Something smaller, like a cat, or a ball, may vanish for a brief moment, but it's almost impossible for something to stay in a blind spot for more than a brief moment. So I can see and recognize things coming from my left. I don't buy the idea that I'm unaware of not being able to see on my left. I can see. I'm very sure that it's not a case of my brain not recognizing or admitting it. At least, I think I'm sure.
Besides, you are only required to have 20/40 vision in one eye to be allowed to drive. I make that. Just barely.
I understand that I am now entering one of the slightly more risky periods. Scare tissue in the brain starts to shrink and harden between 6 and 9 months post surgery. That shrinking and tugging can cause irritated spots in working brain tissue. The result can be seizures starting somewhere between 9 and 12 months. I had already noticed in the online support group that several people had their first seizure during this time frame. As anxious as I am to get off the anti-seizure medication, I don't want to rush it. I'll wait till the doctor says it's ok. Meanwhile, I'll just have to put up with the pain in the groin, the constant cold sores and fever blisters, and increased hair growth. And I may have to have my gums scraped. The medicine causes increased gum growth on top of everything else. The dentist promises it won't be fun.
I go back to the University of Utah in mid March to see the surgeon again. He also scheduled me with the neuro-ophthamology deparment on the same day. They tell me they will be testing my vision for 5 hours. I know they will do another visual field test, but have no idea what other tests are planned. At some point, I'm hoping they will also do some central processing hearing tests. My studies tell me that hearing and visual processing areas in the brain are next to each other, especially the association areas. My hearing in my right ear is about the same in terms of hearing pure tones, but the sound processing has definitely changed. They have some ways of testing that, just as they do vision. It may have to wait for another trip. I've got a hard day lined up already.
I'm satisfied now that it takes at least one year to mostly recover from brain surgery or injury. I've been told this by doctors and other patients. The fatigue and memory are the last things to recover, which is not very convenient. I'm told that most people with brain injury or who have had surgery reach the point where they can go back to work for 8 hours a day. But that's about all they can do on those days, and need the weekends to recover. Most are encouraged to limit themselves to 6 hour work days. The brain never fully recovers it's ability to process the neurotransmitter levels fast enough. People who go back to school are encouraged to ask for assistance, especially for test taking. They are supposed to be given more time, and allowed to take tests in an undisturbed, quiet environment, like an office. The memory doesn't work as well, and the extra intense brain work is literally exhausting. It's hard to not be distracted. This is making me rethink my plans to go back to college. I plan to continue my education, I just don't know how I'm going to do it yet.
I do hope to start some volunteer work a few hours a week in April. That will get me started toward working my way back into the job force. It may take a while. I'll write more about that later.