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    • #26166
      Sherry Toh
      Participant

      Hi all!

      Google isn’t turning anything up, so I figured I’d try asking here. Is there anyone on this forum who has had or who knows someone who’s had a spinal surgery – or any type of surgery, really – with a REALLY low lung capacity?
      Back in December, when my chronic neuropathy was spreading to my face, the doctor in charge of my home visits offhandedly suggested surgery to correct my spine as a possible solution to stop it from getting worse. Though we hadn’t done any scans to determine the current degree of my curvature, he took a look at me said it might still be possible. However, while he was familiar with SMA, he wasn’t familiar with me; he wasn’t aware that the reason I hadn’t done a spine fusion yet was because I’d done a lung function test in pre-teens that said my lung capacity was 23-24%, and the neuro I saw said I had a 50/50 chance success, so my mum and I shot my doctor down without much thought. (I’ve since found out that said neuro should have contacted my pulmonologist about “restoring” my lung capacity – which he didn’t. 🙂 )

      That would’ve been the end of it, but since my neuropathy has been giving me headaches these past few days, I’ve been looking into the matter again. We’ve come so far in science and tech in a decade, right? I would like to consider corrective surgery and talk to my doctors about it if possible, but I also don’t want to waste anyone’s time and money. If you have any info on 1. methods to increase lung capacity 2. what spine surgeries are like now 3. whether the odds are beatable – that would be great. Thank you!

    • #26168
      DeAnn R
      Keymaster

      Hey Sherry! I’m hoping others will chime in with better info than I have, but I just wanted to say I can relate to your hesitancy when it comes to surgery. My last surgical experience was not great, so I avoid it if possible, but sometimes it’s just not possible. Are you a part of any Facebook groups? I’m trying to remember which group it is, maybe SMA Support System, but there are some SMA protocols that can help for being extubated after surgeries. Breathe With MD might be of interest as well. You are right, science has come a long way. Still surgery carries risk, so it’s good to have knowledge going in.

      As far as increasing lung capacity, do you use a cough assist or inspirometer? Those are a couple tools I use for for that. BiPap at night might be another option if you don’t use it already. Not sure it would help increase capacity but certainly help maintain.

      Have you tried non-surgical options like a brace? I know they’ve come a long way too.

      Good luck with your endeavor. Hope you can find the right solution for you.

    • #26176
      Sherry Toh
      Participant

      Thanks for the info DeAnn and well wishes! I wasn’t aware of SMA Support System and Breathe With MD. I’ll check them out. <3

    • #26177
      Sherry Toh
      Participant

      Also, the forums aren’t letting me post or edit my full reply. Sorry. But basically:  Yes to your first question, sans cough assist, and yes to your second question.

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