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Thread: Recent Accident to My Son

  1. #1141
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    I asked Brian why he had to wait so long for the MRI and he said that they had to use a special MRI machine because of the hardware implanted in his neck.

    Roger

  2. #1142
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    What I wrote in the previous post about waiting for the MRI was wrong. I explained the reason to me today. The MRI machines magnets have to be adjusted for the Osteomyelitis examination. It has to do with with looking for infection in the vertebral bones rather than soft tissue.

    In the mean time Brian is on antibiotics. Yesterday, he was at his doctor's office and started having severe spasms. He ended up overheating and they had to apply cold packs to cool him.

    Tomorrow, I'm going to a Spinal Cord Injury Research symposium where Doctor Young will speak. The event is in Phoenix.



    Roger

  3. #1143
    Senior Member Domosoyo's Avatar
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    Hey Roger I was hoping to go to the same symposium when I saw it come up.....thought it would coincide with my April visit to my daughter at UA. Sadly, the weekend she needed me was earlier.

    Here's to Brian getting back to tip-top.

  4. #1144
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    Domosoyo

    I'm sorry I haven't responded sooner. I didn't see your message.

    Brian is still not totally recovered. He get pretty bad spasms that cause him to overheat. He's been working from home but yesterday he went to the CMS Office. My wife is going back to Baltimore on Monday.

    Roger

  5. #1145
    Roger

    Wish him well from us.

  6. #1146
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    I'm in Baltimore this weekend with Brian and my wife. Brian is not doing well. He's still not totally recovered from the event that had him in the hospital in March. He has serve spasms and overheats. On Friday he was at Kennedy Krieger to have the baclofen pump checked but his blood pressure went so high that they called the paramedics to take him to the emergency room. Fortunately, his blood pressure went down just before the paramedics arrived. He's home now but he's still having the spasms.

    Brian explained to me that what was unusual was that his legs were bright red indicating that the blood vessels were open but his blood pressure was 200/160. His blood pressure then went down to 130/80. He doesn't understand why the blood pressure fluctuated so wildly.

    A theory for why Brian is overheating and has spasms is that the internal catheter from the baclofen pump to the spinal cord is the problem. The baclofen pump is working because the volume of baclofen in the pump reservoir is decreasing as it should but possibly the baclofen is not getting to the spinal cord. Brian experienced similar spasms and overheating six years ago when he had to have the baclofen pump removed because of an infection. Last Friday, at Kennedy Krieger Brian's doctor was going to give Brian an extra dose of baclofen to see if that relieved the symptoms but they couldn't do that because of his elevated blood pressure. Brian's going back to KKI next Friday to test the defective baclofen pump catheter theory again.

    Does anyone have any other ideas or can share any similar experiences.

    Roger

  7. #1147
    I'm a c7 complete, 29 years post and I am not dealing with Brian's situation as far as complications go nor do I have his baclofen setup. I also take a minimalist approach to my care. I don't have fixes that sometimes need to be fixed and so on and so on. This is not a critique just an out of the box perspective. Take it for what it's worth.

    - Is the baclofen pump absolutely necessary?
    - Can you make your spasms work for you? I know my spasms are coming by triggers and try and shake em out before they jerk me around. I try and control them and get the increased blood flow and muscle tone as benefits. I have the same amount of spasms I just trigger them instead of them controlling me.
    - Can Brian find a different equilibrium (place where he can have his SCI down time and distractions minimized) without a dependence on a lot of remedies/fixes?
    - Can he inventory his AD triggers both natural and from broken solutions (baclofen pump not functioning as expected) and again minimize his exposure to them?

    I don't mean to butt in but these thoughts came to mind when reading your post Roger.

    Best wishes in getting this under control Brian.

  8. #1148
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    Brian is having surgery next week. Last Friday the doctors determined that either the Baclofen pump or the catheter from the pump to the spinal cord are not getting the Baclofen to the spinal cord.

    I'm going to Baltimore next week to help when Brian leaves the hospital.

    Roger

  9. #1149
    Good luck team Brian!

  10. #1150
    You're a great Dad, Roger. Wishing him well.

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