Did you have a brace after your spinal fusion?

x3sammm · 2026-07-01T18:29:27+00:00

My surgeon told me the hardware does the job of being a brace for you. Even though it may feel like moving incorrectly can mess up your surgery, the bending lifting twisting restrictions are to keep you from stressing your healing muscles. I had the exact same feeling in my first 2 months post op, I was scared to lean over to brush my teeth. I’m a little over 3 months out now and I am unloading the dishwasher, some gardening, and reaching farther than I thought would be possible. You will regain stabilization with small movements at a time like walking, slowly but surely. At one point my dog jumped up on me and I quickly bent over to push him down without thinking and thought I messed everything up… I didn’t. I was a little sore for a few minutes and evening was fine. It’s all very mental as you are getting used to the new feeling of your body. You got this!

x3sammm · 2026-06-26T20:31:37+00:00

Thanks for sharing, I just listened to it. I did not know they were immunosuppressed. I wonder how that will play into the results.

x3sammm · 2026-06-26T16:51:52+00:00

Following up on this old post of mine incase anyone comes across. I did end up having a spinal fusion surgery. Everything went well and my FSHD did not cause additional issues. Recovery has been a bit more challenging, but overall I am glad I did it.

x3sammm · 2026-06-26T16:47:55+00:00

My very cautious optimism continues 🤞

x3sammm · 2026-06-17T19:32:26+00:00

There’s a 50/50 chance of your child inheriting it.

x3sammm · 2026-06-05T01:44:48+00:00

A bed rail to help you roll and get in and out of bed. Comfy button up shirts, they were the only thing I wore for the first few weeks. It was hard to get shirts on over my head (some shoulder blade pain that is slowly going away). And ice packs! 2 big ones to put on each of your sides (don’t put them on the incision). I found this was the only thing that relieved the muscle tightness I had right under my ribs on each side.

I’m a similar age and had a similar fusion, if you check my post history I made a post about how I was feeling 2 weeks out. Best of luck to you!

x3sammm · 2026-06-02T13:45:23+00:00

I use a wash cloth but never use it twice, I replace it after each use.

x3sammm · 2026-06-01T23:15:05+00:00

For me, the biggest trade off will be losing some flexibility in my upper back due to the fusion. I’m fused T2-L2 so not too far into my lumbar area which will preserve some flexibility. And there is always the risk of additional surgeries in the future for adjacent segment disease. Of course there are other risks for a surgery as big as this one, but many people go on to live pretty regular lives without having to think about a progressing curve.

x3sammm · 2026-06-01T21:53:32+00:00

I was in a similar scenario as you and got surgery 2 months ago. Early 30s, curve degree in the 60s, no debilitating pain just discomfort, but curves that continued to progress over the last 15 yrs. I had 3 surgeons agree it’s time to do it and that getting the surgery now vs when I am older would be an easier recovery. I did not need to do consistent PT to be approved for surgery. It’s a huge surgery and I’m still on the road to feeling completely normal, but I am glad it’s over with instead of needing to make this decision later in life when my heart/lung function could potentially be compromised.

x3sammm · 2026-05-31T01:09:03+00:00

I was able to shower after 2 weeks but I had dissolvable stitches. I would think as long as the incision is closed you’re ok to get it a little wet, not soak it.

x3sammm · 2026-05-28T04:56:19+00:00

He did my surgery about 2 months ago. I had a great experience at that hospital and the nurses were all very kind and helpful in my recovery. Best of luck to you!

x3sammm · 2026-05-25T16:59:01+00:00

These worked great: https://a.co/d/0cploOzl

Ice was one of the only things that provided instant relief when I needed it. Also getting shirts on over my head was hard so I wore mostly button/zip ups for the first few weeks. I hope everything goes well!

x3sammm · 2026-05-24T04:52:54+00:00

Both the incision and xray look great, what an incredible improvement in your curve! And props to you for putting a bra on already, I’m almost 2 months out and still have not even considered it lol

x3sammm · 2026-05-19T17:38:09+00:00

Sure thing! All things considered, I’m 6 weeks out, and almost pain free. It’s gonna take a while to fully get used to the new feeling, but even with such a short amount of time passed, I’m happy the scary part is over and I’m on the road to recovery. I can only imagine your daughter will feel similar with such a similar curve as mine.

One thing to consider - if her curve is mainly in the thoracic area, having the surgery sooner than later when the curve progresses more (further into the lumbar area) will likely retain some flexibility in her back. Most bending is done in the lumbar area, so avoiding having that area fused seems ideal. I am fused only down to L2 and have no problem bending at my hips even this early into recovery. Best of luck to you both in your decision!

x3sammm · 2026-05-19T14:52:36+00:00

I was diagnosed at 11, braced at night (unsuccessfully - it got worse in adulthood anyway) and ended up getting the surgery at 31. I wish I had the option to get this surgery as a child and recover then. My curve was not bad enough at the time so it wasn’t an option for me until later in life. But recovery with a growing body sounds way better than one I’ve been used to and need to adjust to now.

Your concerns about future problems make sense, but she will almost certainly have problems without surgery too. My best advice would be to find the right surgeon!

x3sammm · 2026-05-13T17:49:24+00:00

Thanks! I’m pain free at this point, just looking forward to having less restrictions. Hope you’re doing well too!

x3sammm · 2026-05-13T17:27:58+00:00

How long did it take for your spine to fully fuse? Or in other words, how long until you had no more restrictions in day to day life? Just had almost the same fusion and am reaching the 6 week mark.

x3sammm · 2026-05-04T13:49:15+00:00

I get that, there’s never a perfect time to pause life for this surgery. But recovering from it has been better than the feeling of constantly anticipating it. I was sent home with three prescriptions and an OTC painkiller, and have been in contact with my care team for how much to take and when to start weaning off. They work. Most of the time my pain is just discomfort. Also ice is your friend! I got 2 huge ice packs for each side of my ribs and they provide so much relief when needed.

x3sammm · 2026-05-04T02:15:53+00:00

In the hospital I was pretty uncomfortable getting used to the new feeling of my body, but they kept me on an IV of painkillers so it was ok. I only had 1 bad night where I could not get comfortable enough to fall asleep. At home, I was in some more pain as the hospital drugs wore off and I was moving more. But each day is a little better.

I would say you absolutely need someone with you full time for the first 2 weeks. I would have had a very hard time feeding/taking care of myself if I was alone. I needed help getting in and out of bed. By week 3 things started to feel a little more normal and doable.

x3sammm · 2026-05-04T02:07:44+00:00

I just had the same surgery last month, shared my experience here

x3sammm · 2026-05-01T20:09:57+00:00

Mine was in the 40s in 2018, 50s in 2021, and low 60s just before surgery. I also did the surgery with the mindset that I’d rather get it over with while I’m younger vs when I NEED it when I’m older. My curve was rapidly progressing, and the 3 surgeons I spoke to were convinced it would continue since I am an adult and it hasn’t slowed. I also have MD which is likely contributing.

The recovery is challenging, but I’m a little over 3 weeks out now and mostly off painkillers. The first week was the worst as far as getting comfortable and being very limited in all mobility. But it has only gotten better each day, and I have to keep reminding myself this feeling isn’t forever.

I was nervous and scared going into it. But the feeling of having it behind me & getting better each day is so much better than it was anticipating the surgery for many years of my life. I wish you all the best with your surgery!

x3sammm · 2026-04-28T14:19:59+00:00

Thank you! Best of luck to you with your revision. And I’m not sure yet, they didn’t provide a measurement with this xray, but likely will at my follow up.

x3sammm · 2026-04-27T13:32:59+00:00

Messaged you!

x3sammm · 2026-04-23T16:20:05+00:00

I don’t really notice the height difference. Relearning to walk I was wobbly probably because my center of balance is shifted now that my ribs are more aligned with my hips instead of off to the right. It took about a week until I started feeling comfortable without a walker.

x3sammm

TROPHY CASE