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Thread: sharing some good news!

  1. #1

    sharing some good news!

    Thought I'd like to share a major hurdle my son has conquered; in addition to his SCI, he also had a closed head injury with resultant TBI and short term memory loss, after a grand mal seizure about 3 months after his accident; memory was so bad, he couldn't remember from one minute to the next. He did cognitive therapy, but still had major impairments with short term memory.

    We saw a new neurologist last February, who recommended taking him off the Dilantin he was on for seizures and put him on Lamictil; said the Dilantin is a 'fuzzy brain' drug. Also told us about the Baclofen pump - Matt was taking 160 mg. of oral Baclofen daily - which the doc said also wasn't doing great things memorywise.

    Matt got the pump implant in July, and has been slowly weaning off the oral Baclofen; he's now
    down to 25 mg. a day! The pump dose is handling the lower extremity spasms, and he doesn't have any trouble with upper body spasms or tone; in fact he likes the increased upper body tone.

    BUT, the main thing is that it's like a veil has been lifted from his brain; he still has a memory problem to deal with, but is so much more alert and aware, and is now reminding ME to do things!

    The brain injury was scarier for us than the spinal cord injury; you couldn't see it, or touch it, but it was just there.

    What a triumph this has been for Matt; it's like having the old Matt back after three years!

    God bless us, every one!

  2. #2

    Wow!

    Marmalady, what great news! I'm so happy for you and your son, too. Every victory, big or small, feels like a victory for all of us.
    Godspeed~Sci Mom

  3. #3
    Senior Member martha's Avatar
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    Marmalady, that's wonderful news! I'm so happy for you and Matt. I'm sure this has been a huge boost to his spirits as well as yours! It's so frustrating when we find that the drugs that help one thing have had such a negative impact on another. But it's encouraging when you find a doctor that identifies the situation and sets out to rectify it. Best wishes for Matt's continued improvement.

    martha

  4. #4
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    Amen.

  5. #5
    Senior Member KDK513's Avatar
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    Marmalady

    This is great news hearing the pump has had such a positive effect. Did your son suffer from too much tone or spasticity in his trunk area? if so, has the pump had a greater effect than the oral drugs? Now that we are approaching the 2 year mark I am trying to persuade my spouse to at least have the initial test done. He is resisting because he doesn't want surgery. The amount of drugs he takes and the impact of fatigue, dry mouth etc. is terrible. How was recovery from the surgery? Kathy

  6. #6

    re - baclofen pump

    Kathy,

    Matt's spasticity was mostly in his legs, some in his trunk; his legs were so bad that if you even looked at them cross-eyed, he'd spasm so hard he'd either hit himself in the chin with his knees if he was in bed, or just about get thrown out of his chair. He was resistant to the idea of surgery a lot at the beginning, also; but the spasms were getting in the way of so much, he just went ahead and agreed to it.

    The pump has been miraculous in terms of controlling his trunk and leg spasms; in fact, at the beginning, his legs were so 'floppy' it was scary - we're now adjusting the pump dosage so that he has a little tone in his legs, but not real spasms. He's down to 25 mg. of Baclofen a day from 180 mg. orally, and is still tapering; his goal is to completely get off the orals if he can. His upper body - arms mostly - has more tone, but he likes that because it helps him maneuver his chair and use his hands more.

    The recovery from surgery was almost nothing - he spent the night in the hospital getting IV prophylactic antibiotics; had a bad episode of AD I guess when the surgery anesthesia wore off; I had to educate the young neurosurgery resident on the post-op floor what AD was, and what to do for it, but everything was okay. When we got home, even though the doc told him to stay in bed for a day or so, Matt wanted up and around! We had to remind him that he had an incision in his belly, and one in his back, and if he had feeling there, he certainly would be staying in bed, asking for pain meds!

    Everyone has to make their own decision about things like this; have your husband read as much as he can, pro and con, and if he decides to have it done, make SURE you get a top neuro doc who has done these before!

    Jackie

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