One Year Anniversary

The road to recovery has it's ups and downs.

• Near the end of April I was feeling pretty "fuzzy", with a sense something wasn't right. One evening I finally called a cab and went to the hospital emergency room. I don't remember much of the next 24 hours. I hardly knew where I was or who I was. I was kept in intensive care overnight, then transfered to the stroke unit.
• The neurologist I had been wanting to see for some time was called in. She decided I must be having a form of migraine, and started me on Depakote. The change was dramatic.
• I walked out of the hospital less than 24 hours after entering, a little unsteady, still spinning, but I was functioning again.
• The neurologist took me on as a patient, and referred me back down to Salt Lake City to see the neuro-ophthalmalogist again.
• At the Moran Eye Center in Salt Lake City, Dr. Warner repeated much of the testing done in March. She called the Boise neurologist from the exam room, and explained that there are two areas of damage visible in my MRI scans, and there are at least 5 good reason why I shouldn't see anything at all. She can't explain why I can see.
• Spots on the MRI in the back of the corpus colossum, near the brain stem, explain the alien hand syndrome and several other symptoms.
• There is a history of the brain damage in the ct scans and MRI's over time, starting minutes after surgery. There were at least a couple of bleeds, or strokes, and possible blockage of the draining veins. Finally, people not only believe me that the symptoms are real, but there are explanations.
• There is some improvement in the blood flow in the back of my eyes, but still some signs of swelling, suggesting swelling in the brain.
• Dr. Warner explained that the surgery was so extensive that no one can predict the results. She felt many symptoms were the result of partial blockage in the straight sinus or another major draning vein. This is causing fluid to build up in my brain. For some reason, at a certain point, the dam breaks and the fluid drains for a while. Further treatment involves spinal pressure taps during "spells", diuretics, or installing a shunt of necessary.
• Vision is stable.

Occupational Rehabilitation

• The neurologist, Dr. Lindholm, referred me to St. Alphonsus, for occupational rehabilition. This is the same hospital who's emergency room I know so well.
• I also manage to obtain a low cost membership at the YMCA, and sign up for a cardiovascular program. I would use the pool and sauna, but can't find my way through the maze of hallways without getting lost.
• Rehab goes so well it lasts only a few weeks, then I am referred to the Commission for the Blind for vocational rehabilitation.
• My DepaKote dosage is increased twice. It seems to help the headaches, but leaves me drowsy.

Night vision is still almost nonexistent. There are good vision days and bad vision days. I'm able to drive well on some days, but don't feel comfortable driving on other.

By June I am into the second month of searching for someone to rent the second bedroom in my apartment. My daughter moved out by the last of April. Being alone for the first time since the surgery is sometimes scary, but nice as well. What's most frightening are some of the characters answer the ads for the apartment. The search is not going well. It takes my entire social security and ssi check to pay the rent. I'm having to visit food banks, and have to drive to their locations, whether it's a good day or not. They are open only at certain times. I couldn't carry the boxes home on bus if there wwere bus routes near by.

I had another MRI done to make sure there were no more changes, an that's how the results came back. The damage in the back of my brain and in the middle is unchanged. I will not be seeing the surgeon again, at least not in the near future. The neurologist and neuro-ophthalmalogist are in charge of my care now. I am finally getting some answers besides emotional response to the trauma of surgery. I am dealing with very real, physical trauma from the surgery. Specifically, bleeding that took place minutes or hours after surgery, and possible blockages in the blood drainage from my head. Otherwise, things are continuing to immprove on a steady track. I'm told it will probably take 5 years for good nerve fibers in the corpus colossum to take over the tasks of the damaged ones. That substitution may be taking place in the bacck of my brain, making it possible for me to see.