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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, 4 voices, and was last updated 8 months ago by Alyssa Silva.

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    • #21598
      Alyssa Silva
      Keymaster

      Whew. It has been a DAY and it’s only 12 PM EST as I’m posting this. I woke up at 4, drove 1.5 hours to Boston Children’s Hospital, had a minor procedure on my ears (bilateral ear tube removal), grabbed coffee and food, took the hour drive (no traffic!) home, and began my workday before 11 AM. What in the world?

      Safe to say I’m running on fumes and caffeine right now, but I wanted to hopefully get some input on ears if you had any.

      I had my tubes placed almost 2 years ago due to chronic ear infections. Fluid would get trapped in my middle ear, exasperate my vertigo, and make me miserable overall. Unfortunately, the tubes worked TOO well. Mucus and blood pour out of my ears on a pretty frequent basis as a result. The tubes became infected with yeast from all these infections I’ve had, and drops weren’t helping. So I had to get the tubes removed.

      We’ll see what happens now. To be honest I’m not very hopeful. I just don’t understand where all this fluid comes from, and the doctors are unsure as well. It’s been a rough journey in this regard (the info mentioned above is only a brief synopsis), so I’m just a little emotionally drained.

      As someone with SMA, do you have problems with your ears? I’m wondering if it’s eustachian tube dysfunction due to SMA weakening the muscles? I’m really not sure. All I know is I wish I had some answers for peace of mind.

    • #21607
      DeAnn R
      Keymaster

      Gosh, I hope things get figured out for you. I haven’t had issues, so can’t be of much help. The only thing I can think of is that with a weak swallow sometimes saliva and mucus can be pushed up instead of down. I could imagine that could cause ear problems too. I could be way off base. Are you on any allergy meds? I’ve heard they can help with extra secretions. Another medical mystery.

    • #21608
      Dennis Turner
      Participant

      I have not had ear problems either, but it sounds like you are being followed by a good team.

    • #21613
      Halsey Blocher
      Participant

      I’ve never had quite that problem. My ears make too much wax but I’ve never had a problem with fluid or ear infections. Hope you figure it out!

    • #21625
      Alyssa Silva
      Keymaster

      I’m so happy you’re saying this DeAnn because that also crossed my mind and I thought I was crazy. I’m not on allergy meds because even the non-drowsy ones make me drowsy. I don’t have a lot of secretions, but I do at night because of my BiPAP. Definitely bringing this up to my ENT.

      Thanks, Dennis and Halsey. If one thing for sure it’s that I do have a great medical team and am really fortunate.

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