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5026Re: My son had brain surgery on March 23

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  • sally.1234sally
    Apr 18, 2011
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      My son was discharged home from the rehab facility on April 8. Since then he has made an awesome recovery and is fully functional and quite independent now! He no longer has the expressive aphasia and his right-sided weakness is nearly gone. However, on April 13, 3 weeks following surgery, at a followup with his neurosurgeon, we were told it was a grade 3 oligo, a malignant neoplasm. That was the first time we heard the actual diagnosis. A nurse at the rehab place told us the diagnosis was "benign neoplasm" so this bit of news hit us rather hard! Well, he started Temodar today, along with Bactrim and Zofran. He will be on this for twelve months. Today is Monday, April 18 and he told me yesterday I should go home this weekend. I am waiting to hear from his insurance regarding the coverage for Temodar. He may qualify for some assistance as he is only a student with no income but we are waiting to hear back on that.

      He choose to take his Temodar in the morning with his other meds rather than at bedtime, as bedtime for a college student is kind of up in the air and he always gets up at 8:30 to take his other meds anyway.

      Anyway, his progress since being home has just been amazing, he is ready to fly on his own now and I'll get to go back to being a long-distance mom once again.

      --- In BrainSurgery@yahoogroups.com, "sally.1234sally" <rharlow2@...> wrote:
      >
      > The surgery went great. The doc says he got most of my son's oligodendroglioma out and I am so thankful for that. What we were NEVER alerted to were some of the side effects of a left frontal craniotomy, namely expressive aphasia and right-sided weakness, so when these symptoms didn't get better in the few days after surgery, that hit us like a ton of bricks. My parents and I drove 1800 miles to CA to be with my 20-year-old son (a junior studying electrical engineering). The day after surgery, even though I had never been told of the side effects, I accepted them as "temporary" but as the days went by and he was not getting much better, it was decided by the doc to admit him to an acute rehab facility and then it was a waiting game in the hospital - waiting for a bed in the rehab facility to become available. He could have been discharged home Saturday following surgery but insurance would not cover rehab if he went home. A bed did not become available until Wednesday March 30. In the meantime, I started working with my son with numbers, letters, spelling, colors, shapes, etc. I know this is a horribly frustrating experience for him because he KNOWS the answers but the wrong words come out of his mouth. My hair is brown but he replied "yellow" then "red" when asked, then laughed because he heard himself give the "wrong" answer. But he can spit out the numbers for pi to like 10 digits! lol. funny thing, the brain. Thank God my son has a sense of humor. I just told him that this situation absolutely SUCKS but here we are and we need to move forward and work hard together. He gets it. On Tuesday March 29 he could not open his hand, extend his fingers or make a fist. He was up and walking, though, and his balance seems to be just fine - just a small deficit on the right side and awareness of it. But the next day, Wednesday, March 30, he could open and shut his hand and just yesterday he is now able to pinch weakly - I bought him a white board and have him practicing his writing. I had only planned to stay in CA for 2 weeks and flew home yesterday - but I have to go back to be his caregiver until he is able to function independently. My job, thankfully, is portable, and his apartment manager is graciously allowing me to move into his place and even providing me some furniture - the only thing I lacked was transportation - so I bought a car back home - I will pick it up tomorrow and drive 1800 miles back to take care of my son.
      >
      > Has anyone in this group this experience? How long did it take you (or your loved one) to "recover" from these side effects? Any words of wisdom?
      >
      > Thanks so much for this group to allow me to 'vent' ..
      >
      > Ronna :o)
      >
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