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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 4 replies, 3 voices, and was last updated 6 months, 2 weeks ago by Brianna Albers.

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    • #22100
      Brianna Albers
      Keymaster

      The recent thread on SPCs has me thinking about getting one! But I’ll be honest: surgery makes me really nervous. Like, really. My spinal fusion was pretty traumatic, to the point where I tense up whenever surgery is mentioned. Like right now.

      But apparently twilight anesthesia circumvents all the issues surrounding surgery. I had a not so good experience with laughing gas the second time I had my G-tube placed (long story), but I’m trying not to let that stop me. 

      If you’ve had twilight anesthesia before, what did you think?

    • #22103
      Rachel Markley
      Participant

      So easy! I think I’ve had it twice but the one I was old enough to remember (SPC in October) felt just like a regular surgery but I didn’t go to sleep scared to death of complications. I don’t remember a thing from the second they gave me drugs in pre-op to when I woke up. It was certainly easier to wake up from and I had zero complications. Also, get the SPC!

    • #22109
      DeAnn R
      Keymaster

      Spine fusion is a major major surgery, so yes very traumatic.  I’m not a fan of general anesthesia though because I had a bad experience when I had my gallbladder out.  When they intubated me I aspirated so woke up on a ventilator with aspiration pneumonia and they had trouble getting me off the vent.  So, if I need any procedures I try to see if they can do it under twilight.  I’ve had 3 or 4 procedures with twilight and haven’t had problems.  To be honest I’m not sure the difference between laughing gas & twilight sedation.  Possibly different drugs involved?  I’m sure if you discussed your concerns with the doctor they could ease your mind about it.

    • #22110
      Rachel Markley
      Participant

      Gas is a totally different drug and your body will respond very differently. I don’t do well with gas either!

    • #22186
      Brianna Albers
      Keymaster

      Thank you both! I’ve scheduled an appointment with a urologist, but it’s not till May, so it won’t be for a while.

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