Here is my 6 month update.
Brief history: recurrent rt AN, 2.5 cm from IAC but 3.3 x 1.4 x 1.6 cm long narrow C-shaped structure attached to and indenting the brainstem. Many neurosurgeons I consulted did not want to operate, be it microsurgery and radiosurgery, because of the first surgery. I found that my options were greatly narrowed as opposed to the same size new tumor 2.5 cm from IAC.
Overall summary: My recovery follows the pattern of the first, rather than second surgery: at 3 months, not earlier, I become barely functional around the house, like walking, cooking,etc., and at 6 months I become functional somewhere within the normal range, just slow for me. Just yesterday I saw people I did not see exactly for a year and they did not know I had the surgery. They did not think there was anything wrong with me. Good! Of course,they did not see me dance!
I found the second surgery infinitely easier than the first surgery. I am not going into what happened with the first surgery but suffice it to say that the first surgeon saved my life but took away its quality for the next 10 years, after which I really considered myself recovered. The second surgery will have a much shorter recovery period, I can see it now, and the quality of my life is preserved.
Hemiparesis: This is weakness and inability to control one side, right one in my case. This is not common now except for the biggest tumors and strokes but I got this in both the first and the second surgery. Thank God, this is the only thing in common but by itself it is bad enough of a complication because this is what slowed me down. When I came back home from LA, I could not sign my name on a check and obviously no sentences or paragraphs (right is my dominant side). Now I write out all the checks, never slow anybody down in a supermarket when I sign my name on a credit card slip, walk normally when I walk slowly and with a slight limp when I walk fast. I also started running on a treadmill and I am really close , not even a mile away from my normal speed. I can also do at least 10 sentences by hand, just slower than before. I write now mostly in script, not print. I have noticed that scripting is more difficult than printing and requires connected, smooth movements. My jerkiness and trembbling are gone. I can also write fast enough after somebody speaks on the phone now, I could not do so at 3 months.
Balance: Even though my balance was perfect pre-surgery and there was no vestibular nerve to take out, it was affected and I was discharged with a walker.My static balance (while standing on one leg) has become normal a long time ago but not my dynamic (when moving ) balance. I think hemiparesis has a lot to do with it. My right side is still generally slower and weaker and it affects my balance when I walk because it can easily tilt me to the right. The timing between sides can be off as well with the right side starting or stopping to walk at different times, all of which causes me to be off balance. I can stand on a step stool in my own kitchen and wipe out the dust with no problems.
Headaches: None!!! No headaches whatsoever, no incisonal pain, no lightheadedness or dizziness.
Facial and Trigeminal Nerve: I could always move my eyebrow and had an even smile, however, the sensation ( but not the pain) was affected in my cheeck and half of my tongue. At 3 months, sensation made a major improvement and at 6 months it almost returned. I also noticed that my face no longer hurts when it is cold or windy out and the tightness is even smaller now, both in degree and in area. Nobody can tell there is anything wrong. It does not bother me anymore.
Speech: Was slow, imprecise and unintellligible when I came back from LA, became intelligible at 6 weeks as long as I kept to short sentences and words, made major improvement at 3 months when my tongue became less numb and obviously became normal at 6 months post-op because I can articulate the longest words properly and people do not notice any difference. I asked my husband about speech after the first surgery and he answered: "it is simple. You did not talk at all!" I guess all the pain and fatigue made me talk in simple words and sentences which probably masked my speech difficulties at that time. My friends say that my voice became normal before my speech, at about 5 months. "Just like your old self", they say. Good!
Psycho-social: This is the only thing I found more difficult the second time (no fault of the surgeon here!). At 25, I had no kids and the house, no bills to pay and ,therefore, no checks to sign. I was still treated like a child and people wanted to take care of me. I really needed that! So many people did and many more offered. At 44, I have two kids and a house, many checks and forms to sign as well as parties to host in my house because everybody is coming over! Everybody treats me like an adult now - just a few weeks of recovery and after that it is all my fault. Even ANs and hemiparesis! I did not need to be taken care of the second time but it is really difficult to stuff that turkey and put on makeup (especially eye make-up) with hemiparesis! The last thing I need is to be laughed at because I walk funny! It just makes me want to crawl into a hole and not see anybody until I am healed! The turkey, the special dinner table and even eye makup all turned very well, by the way! All of that combined is probably better than OT for my hemiparesis!
Eve
