• Posted by daniela-s on January 21, 2022 at 10:55 am

    Hi guys, new here. I’ve been checking out articles and forums for a while now but finally decided to join in. I hope to become a bit more active in this great SMA community.

    After having pain and having it checked out I was told I have gallstones. It honestly didn’t bother me for the most part so decided to just monitor it. Fast forward a yr and a half and it’s gotten more uncomfortable. Not intense pain but pain that is just there. I had an appointment with my Dr. this week and have decided to schedule surgery to remove it. Surgery is not ideal but the pain has gotten uncomfortable enough that I’ve had to agree. I would rather have a planned surgery rather than an emergency surgery.

    I have seen a few posts in forums about members having had issues with their gallbladder or having it removed. I was wondering if anyone could share their experiences/tips/ things I should bring up to my dr. I’m having a bit of anxiety regarding the surgery, anesthesia, intubation. I haven’t had problems in the past but it’s been nearly 10 yrs since I’ve had to be put under.

    Any help will be greatly appreciated!!

    alyssa-silva replied 2 years, 2 months ago 4 Members · 4 Replies
  • 4 Replies
  • deann-r

    January 23, 2022 at 4:58 pm

    I was hoping someone would reply first with a more positive experience. Possibly you can learn from the missteps of my case. Because I have a feeding tube we couldn’t do it laparoscopically. It made the surgery more complicated and extends recovery time. While being put under I aspirated causing aspirations pneumonia. During the surgery my hip contractures caused difficulty positioning and the surgeon nicked my bile duct. Because of that I needed additional procedures to repair it. Due to the aspiration pneumonia I woke up on a vent. They had trouble extubating me as they didn’t use any SMA extubation protocols. So, an expected 1 week hospital stay turned into 3.

    If possible doing the surgery laparoscopically would probably be the way to go. Talk with the team about positioning. Also talk about your concerns about being anesthetized. There are certain drugs that should be avoided with folks with nmd’s. Have a plan in place if they have difficulty extubating. I’m not sure if you use breathing support or not. I think it’s important to know about the proper use of supplemental oxygen and what machines and settings can be helpful.

    Here are a couple links I’ve found helpful: https://breathewithmd.org/oxygen-caution.html

    Good luck!

  • daniela-s

    January 24, 2022 at 10:11 pm

    Hi DeAnn,

    Wow that sounds like a horrible experience!! I’m glad you eventually got well enough to go home. I can’t imagine how difficult the situation must have been. It really sucks that we have to constantly advocate for ourselves. I’m glad this forum exists, it allows us to share our experiences so hopefully the next person has a better experience.

    I don’t have a feeding tube so the plan is to do it laparoscopically. I will definitely bring up positioning, I was already thinking about it but for different issues (not having a muscle pulled/sores developing). I only use a bipap while I sleep. My doctor also said he would get clearance from my neurologist and pulmonologist howver I was just transferred to this adult hospital last year and have really only seen them twice. Which makes me feel a bit iffy if they will cover all their bases. I think the link and pdf will help a lot though. I will share with my doctor so he is aware and the team can do more research on dealing with nmd patients.

    Thank you so much for all the resources and for sharing your experience!

  • mike-huddleston

    January 29, 2022 at 1:26 pm

    Hey Daniela and welcome.

    This past September, I had “emergency” cholecystectomy as I was inundated with gallbladder stones and my gallbladder was gangrenous.  Nasty stuff right there.  My symptoms came on suddenly and severely.  Unlike DeAnn, and I feel very fortunate, I was able to have mine removed laparoscopically.  I do not use a feeding tube and am a type 3 who uses a power wheelchair.  They did put me under and that went well.  No issues and I was able to resume normal activities within a few days.

    DeAnn gives excellent advice; I just wanted to provide feedback on a recent less complicated and thus to me, a more positive experience.

    Best wishes and I hope it goes well.



  • alyssa-silva

    April 12, 2022 at 7:50 pm

    Hi Daniela! Was just thinking about you and how you’re doing with your gallbladder. Were you able to have surgery? Feel any better? We’re here if you want to chat.

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