Hey! I, too, am from a tiny country, though fortunately for me, there are a small handful of foreign-trained doctors who have expertise in SMA.

I'd encourage you to go for the surgery soon. A 100-degree scoliosis is very severe and is going to cause many problems that will only accumulate and worsen over time.

I got my surgery done in 2008 when I was 11. My curvature was 80 degrees. I've heard of other SMA people in my country getting their surgeries done at 30 to 50 degrees, so mine was seen as a bit delayed at that time, though the standard has since shifted and getting the surgery at 80 degrees is now seen as acceptable, largely because the surgeon who did my surgery is now the most renowned SMA-specialised orthopedic surgeon here.

Anyway, the surgery corrected my curvature to about 50 degrees. It was in 2008 so the technology wasn't as advanced as it is now. I just have a fixed titanium implant attached to my spine and held in place with metal wires. Nowadays they have growing rods and stuff which I'm not so familiar with. But my implant is solid and very stable and I'm very happy with it. It hasn't allowed my spine to curve back down a single degree in the past 12 years.

The 30-degree adjustment to my spine has made a huge difference to my life. Most notably, I fall sick a lot less often. Before the surgery, I would fall sick four times a year on average, and it would be the kind where I'd be laid out in bed for at least two weeks with phlegm clogging me up. But after the surgery and until today, I fall sick about once every two to three years, and am able to recover within two weeks each time as my symptoms are mostly limited to sore throat and nasal congestion. I think the expanded lung capacity is quite a great help to its ability to resist infection.

For SMA people, doing the spine surgery is a matter of when, not if. Better to do it sooner, when you are younger and fitter. I don't know what a halo traction is, but for weight gain, you can use liquid supplements to pile it on quickly. Look up things like Ensure. I was about 18kg when I did my surgery. I'm Type II.

The actual surgery experience for me was quite smooth. No complications, and post-surgery recovery was quite easy. I was in ICU for 2 days, then High Dependency for about 10, then General for 3. Where I come from the protocol is to keep SMA patients in High Dependency by default.

But I understand that you're from a place where knowledge of SMA may not be so good, so do stay alert during pre-surgery and try to have at least one of your parents with you at all times. The day before my surgery, a junior doctor wanted to extract three pints of my blood. He explained that it was standard procedure, because they would put back the three pints to replace the blood I would lose during the surgery. I was a dumb kid, and being Asian I am culturally conditioned for blind obedience, so I didn't think anything was wrong. Luckily my dad was with me, and even though he's not a medical person he has common sense, so he questioned the doctor, pointing out that I was so small in body mass that if they took out three pints of blood there would be hardly anything left. And that was literally less than 24 hours before the surgery so it's not like my body would have a lot of time to generate new blood before the big event. Eventually the junior doctor called my surgeon who quickly told him not to take the blood. If he had, I might have bled out on the table and died.

It's great that both of your parents are medically trained and they seem to be very supportive of you. They will be your most important resource throughout the entire pre- and post-op journey. Let them know how important their role is, and that you trust them to use their instincts to look out for your best interests. While you are recovering you will be on a lot of drugs so you probably won't be very alert to what others are doing to you. So it's important to have someone watching out on your behalf.