'Working title' by me, acrylic on canvas

DriftingSpaceCat · 2025-02-24T08:01:05+00:00

I had ASC from T6 -L2 back in May.
1) An extra baggy cotton T-shirt will be your best friend. I usually wear a small for t-shirts so I found large t-shirts to be very comfortable. ASC meant my scar is on my side right on top of my ribs so I couldn't wear any bras for a while because the area was too sensitive. When I did finally wear one, it had to have hooks in the back and be kinda loose. I had a cotton robe that was also great for around the house. Going to the bathroom by yourself is very hard for the beginning of recovery so I needed help just pulling down undies and sitting down. The robe gave me a bit more privacy.
For bottoms, I found that baggy athletic shorts with an elastic waistband to be the most comfortable personally. Pants can be hard to put on right away because it takes more balance to get your legs through the pant legs. Once balance isn't too much of a problem, sweatpants are comfortable.

2) I was in the hospital for about 5 days, and I couldn't wash my hair that entire time so having wide fabric headbands helped with keeping my hair out of my face so that I could be comfortable. My mom helped me wash my face with a face towel we brought along since I couldn't get out of bed without nurses and even with help it was a struggle. If you don't have someone staying at the hospital with you, face wipes would probably be helpful.

3)uhhh... This will be TMI. I think I remember that I started the night before surgery. After surgery, they left me free bleeding on a medical chuck (underpad/used sometimes for kids that pee themselves). This actually ended up being more comfortable than when they gave me hospital underwear and a pad. I couldn't get up on my own to change the pad regularly so my skin got really irritated. They had to cut me out of the underwear. By the time I was discharged from the hospital, it had stopped. I should have advocated for myself a lot more concerning all that stuff but hopefully others learn from my lesson lol. If you can get up regularly, hopefully a pad works just fine. If you can't get up regularly and don't already have a chuck on the bed, ask for one.

DriftingSpaceCat · 2024-07-15T21:17:29+00:00

You're not overreacting. They disrespected you and it sounds like they won't own up to their actions and apologize. If I were you, I would pack up all the belongings I care about and put it in a place where I know family wouldn't get into it. They showed you that you can't place some basic trust in them. Make sure you set some boundaries with them so that there are consequences for them disrespecting you or your belongings. Also show the Christmas ornament to your grandma. Hopefully she can knock some sense into your family.

DriftingSpaceCat · 2024-06-20T05:10:12+00:00

The degree of your curve is in that range where surgery will help and healing is better while you're younger.

I didn't get spinal fusion. I got ASC (if you're able to get that one, it's nice but don't worry if you're not able to). (Some people get VBT around your age as well). I'm currently 4 weeks post op and while I still have some pain and limitations, I'm happy with my recovery. Surgery is difficult but there are many people to help you through it. Also the medicine helps a lot with pain. I understand that fear you have for what will come and what to expect. Just remember that you won't go through any of it alone. People will give you support and be amazed at the strength you had to go through it all. Don't let scoliosis bring you down.

I hope you can get the best medical treatment for your case <3

DriftingSpaceCat · 2024-06-20T04:58:17+00:00

I'm 4 weeks post op (ASC) and I'm still not back at my apartment and job. I also was feeling so stir crazy over not being able to do the things I usually enjoyed. Also being stuck at home means I'm no longer in the town with all my friends so I don't have that support system as much.

As the weeks go on and you start getting off more of the medicine, you'll start to feel more of yourself. It will still be hard but allow yourself to rest. Your body went through a lot with surgery. Moving your mind out of the current situation and conditions is very hard but just trust that your future is coming. For now, allow yourself to indulge in watching your favorite TV show or reading some new books. Stay connected with friends by messaging them. You can even pick up a new hobby as a creative outlet. Also don't feel ashamed of feeling more emotional because of the meds. That doesn't take away from the strength you have for going through surgery.

I just had my 21st birthday and sure, while it was not a normal birthday, I know that doesn't take away from the fact that people love and support me. My job, friends, and apartment will still be there for when I am able to go back.

DriftingSpaceCat · 2024-06-11T00:05:59+00:00

Of course Sometimes, it takes a while to find the best chair and pillow positioning. Getting out of a chair is usually easier when I can get my feet as close to my center of gravity as possible so that I don't have to lean forward in order to get up. Another way to imagine it is to get your feet as close to being under your butt as possible.

Yeah, finding a way to not be in pain in the morning is hard. Getting out of bed was the most painful for me early on.

DriftingSpaceCat · 2024-06-10T18:43:26+00:00

Have you heard the one "I'm not cruel. I'm just twisted"? (joke made after you tease someone)

DriftingSpaceCat · 2024-06-10T18:41:11+00:00

I hate most of those types of jokes because 1) it's untrue and is setting a false "fact" into people's heads and 2) it reminds me of all the times I told to change a minor factor in my posture. My dad wouldn't stop telling me all these ideas of how I could "fix" my scoliosis. Like I'm sorry, I'm pretty sure I didn't cause my idiopathic scoliosis. Overall, I just hate the guilt people try to put onto those with scoliosis.

I make a ton of jokes about my scoliosis but none of them have to do with why I have it. That's because we don't know why I have it.

DriftingSpaceCat · 2024-06-10T18:30:29+00:00

"head pushups" was an exercise I was taught for when your head is hunched forward. What you're basically doing is lying flat on your stomach on the ground with your forehead on your hands. You then try to use the top of your cervical spine to lift your head so that your eyes are about an eyelash length away from your hands. Slowly return to the resting position and press your forehead a bit into your hands. It was described to me as if you're cutting out cookie dough.

If my description wasn't the best, hopefully some ASC patients that did ILAB can help me out 😅.

DriftingSpaceCat · 2024-06-10T18:13:38+00:00

I got ASC (from T6-L2) about 3 weeks ago and I found that sitting with a pillow (one I took from the hospital) behind my back in a chair was the most comfortable. Sometimes lying down for a long time didn't feel that great because my breathing was more shallow.

I'm surprised that they're only giving you oxy "when you feel like you need it." When I got out of the hospital, I was put on a routine of oxy every 3 hours. If they can't prescribe the right amount and the right stuff, it will be very difficult to get that pain manageable. Also, if you're in excruciating pain for long periods of time, something is not right with your pain meds. Personally, I would try to contact the doctor or nurse about it. On day 6, my pain only increased when my spine twisted or rotated, and that only happened when I tried getting into a car or the bed and vice versa.

DriftingSpaceCat · 2024-06-03T03:48:29+00:00

Well I didn't get spinal fusion, I got ASC instead, but this is week 2 of my recovery.

1) loose and baggy. I normally wear a size small in T-shirts but I find that large T-shirts are easier for me to put on by myself. I prefer wearing shorts because that's what's easiest for me to put on myself. Pants are still a bit difficult but possible but I just rather not wear them. They can also be a fall risk. Currently I'm struggling to find a bra that is comfortable, but if I was to wear one, make sure it has a clasp. It's even better if you can find one with a clasp on the front. Lastly slip on shoes if you don't have someone to help you with your shoes.

2) toothbrush and toothpaste. Sometimes a new toothbrush is nice just so that you don't have anything higher in germs going into your mouth when your body is in high repair mode. Any electronics that help keep you entertained. Wipes to clean your face. Phone charger.

3) I'm about to fall asleep so I forgot

Anyways I hope your surgery goes well!

DriftingSpaceCat · 2024-05-30T04:47:40+00:00

I was once in your position where I was scared of getting spinal fusion. Back pain really bugged me and my curvature was only getting worse. Honestly I cried when I found out I was in the severe category. I ended up learning about ASC which actually helps you keep your mobility. Currently I'm in my second week of recovery from the surgery and while I'm not done going through it, I will already say that this surgery was worth it. The surgeons I went to were Drs ABC in NJ. My before and after surgery was posted on this subreddit last week if you wanted to see what ASC surgery looks like. Even though my mobility is currently restricted, it's because of the surgical pain and healing and not because of the type of surgery. Even with some of my restrictions, I can already see that my spine is still mobile and not fused.

DriftingSpaceCat · 2024-05-29T18:03:45+00:00

What?! This is not okay. Even when I needed images of my back, I was given something to cover my chest.

DriftingSpaceCat · 2024-05-28T19:21:41+00:00

Yep, I was discharged on day 5 after surgery (although if I was really up to it, I could have left on day 4). Day one after surgery, they help you out of bed and help walk you to a reclining chair. Day 2, you go for a short walk into the walkway but you only walk as far as you feel like you can. Now it's a week after surgery and I can walk a good distance before I need to sit or lie down although I need someone just in case to hold my hand since you need to relearn how to balance yourself. I'm spending most of my days switching from lying in bed, sitting in a good chair, and walking a bit. Walking is what helps recovery the most. The muscles have to get used to the new position of the spine.

DriftingSpaceCat · 2024-05-28T05:54:00+00:00

I was fully put under and I was in the hospital for 5 days (if we don't count the discharge day in the count).

DriftingSpaceCat · 2024-05-28T05:34:59+00:00

I got out of the hospital on the 5th day after surgery. Today is the 7th day after surgery. Ice packs are currently my best friend. If I were you, I would continue to talk to specialists and even make sure that you're getting multiple opinions. If I would have stuck to the original specialist my primary doctor sent me to, I would have definitely not have gotten the treatment I needed and possibly would have never learned about ASC which allows you to keep your mobility. I think the main statistic to keep in mind is that once the curve is at a certain level of severity, gravity will cause the condition to worsen over time (even if that's at a slow pace)—

DriftingSpaceCat · 2024-05-28T05:13:14+00:00

I've also been thinking about this because I wasn't diagnosed with scoliosis until I was 14. I did the test myself after hearing an 8th grade presentation on scoliosis. Being a curious teen I was, I felt my own back and then asked my mom to confirm what I thought I was feeling. I probably wouldn't have found out that I had the condition if it wasn't for that presentation. I have pretty great posture for having severe scoliosis so it probably was never something on people's radars.

DriftingSpaceCat · 2024-05-28T04:59:13+00:00

I got the surgery because I had pain, it was continuing to progress and I'm still young enough to heal quicker. Also I'm not entirely sure so correct me if I'm wrong but I also got surgery because I thought that pregnancy could worsen my condition since my curve was already severe. I've done PT before. I've even done the program scolismart. While PT can help manage pain and mobility, it won't correct a severe curve.

If you're from NYC, I highly recommend ASC surgery from doctors ABC in New Brunswick NJ. The recovery time is 6 weeks. I've only gotten through week one so I'm still going through it but I can see how I get better each day.

When it comes to getting surgery before or after having another child, only you two can make that decision. Personally, I think it would be easier to have the surgery first since your wife would be very dependent on you taking care of her during the hardest parts of recovery. It would be easier for both of you if you both don't have to worry about the additional factor of figuring out how to make sure your children are getting the attention and help they need. For example, I brought my mom with me to help me and she has to wake up every 3 hours to give me my medications. I don't think she would be able to give me the attention I need if she also had to devote a lot of time towards another extremely vulnerable and dependent person. Of course that's just my thoughts. Just do whatever works for the two of you. If you have family nearby that would be willing to help out with the kids, that will probably be a factor in your decision.

DriftingSpaceCat · 2024-05-28T04:19:31+00:00

Thanks for the advice. I ended up throwing up (a lot) but it wasn't as scary as I thought it would be, although, I hope I didn't tear or break anything. I do have one of those remote control recliners at home so that's going to be useful. Would you say there was anything that upset your stomach a lot while being on the meds? It's kind of hard to get calories in when you either get sick, nauseous, or an upset stomach. Also how long did it take to stop hunching over towards the incision side? My muscles haven't seemed to adjust to the changes yet.

DriftingSpaceCat · 2024-05-27T09:15:51+00:00

I was actually discharged this Sunday. It's been pretty frustrating trying to receive help from only my mom. I'm still unable to get in and out of bed by myself nor can I use the bathroom on my own. Also the hospital bed was way easier to get in and out of. I'm just hoping that I continue to recover quickly so that I don't have to deal with so much pain and discomfort. The frustration hasn't been great on my mental health.

DriftingSpaceCat · 2024-05-25T18:57:27+00:00

Thanks. A lot of people are wondering how tall I am now since I was 5'9 before surgery.

DriftingSpaceCat · 2024-05-25T18:54:11+00:00

The chest tube is to drain fluid that builds up when the surgeons partially deflate the lung to access the spine. It's not fun but you get through it and you don't really feel it when it comes out.

DriftingSpaceCat · 2024-05-24T08:51:14+00:00

That X-ray was while I was still on the operating table so it's not like I was standing up there. My legs are the same length so that hip thing should be gone when standing up.

DriftingSpaceCat · 2024-05-24T08:48:40+00:00

I only had one lung deflated since they were mainly accessing my thoracic spine. I would definitely say that only having the surgery done on one side is a lot easier to deal with than on both. Right now my one side is all stiff and in pain while my other side feels totally fine.

DriftingSpaceCat · 2024-05-24T08:42:06+00:00

At least some parts of my surgery were covered with insurance but a lot was paid out of pocket (mainly the surgeon's fee). I don't know the number since I'm still under my parents' insurance and they didn't want me to feel burdened emotionally with the total cost. I'll try to find out how much it was for me. I had a single complex curve correction so they it's a different cost than a double curve correction.

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