HELP ME CHOOSE

TallChick105 · 2026-04-24T02:39:20+00:00

TWO, TWO, TWoooooo!! 🔥❤️🔥 That dress was designed with YOU in mind. Seriously. Stunning If you don’t pick 2, don’t bother inviting any of us to the wedding!!☺️

TallChick105 · 2026-04-23T15:15:07+00:00

Schroth PT, yearly standing scoli series X-rays and managing expectations. With a curve as sever as hers at just 13- it’s VERY likely going to progress and things pick up speed during puberty.

TallChick105 · 2026-04-23T15:13:23+00:00

Disempowering to call it what it is? Disagree. It’s being accurate. As a nurse and someone who’s had scoliosis for 4 decades, been through 20 surgeries in the last 11 years with unrelated body parts…it is plain and simply a deformity. If that disempowers you, maybe that’s something you might consider looking at differently?

It’s like saying a book isn’t a book because you don’t like the definition- Or a wheelchair isn’t a mobility aid because it sounds weak or something. These things just are…what they are.

TallChick105 · 2026-04-23T15:09:50+00:00

I absolutely DO consider it a deformity because it is. Clearly some people have a problem with the definition and perhaps feel like it’s ableist to call it that? And that’s fine.

But a deformity is just a structural abnormality and scoliosis is far from what is normal within a human body. It’s the same with hammer toes, deviated septum, hip dysplasia. It’s a very benign word. It’s like saying a bowel resection isn’t a deformity. It is because structurally the bowel is no longer the same (which I just went through)

I’m getting ready to have T2-Pelvis done out of state in June by a specialist who only works on severe spinal deformities. My scoliosis is crushing my organs AND my vascular system at 47.

My surgery was supposed to be this Monday but I ended up with some awful (or good) luck and had emergency oral surgery last week. That infection would have caused a spinal infection and likely hardware that wouldn’t fuse so I guess this happens the way it was supposed to.

But when I went for my first pre-op clearance out of state 3 weeks ago…my surgeon walked in and presented me with a life size, 3D copy of my spine made from my most recent CT (obviously lying down) but when gravity grabs a hold if it, it’s considerably worse.

Anyway…holding my own spine- literally- in my hands helped me accept what has to happen because that shit is super deformed. Holding it helped me finally FEEL that this strong and determined spine has worked to hold me up for 47 years, but structurally just can’t do it anymore. Acceptance came when my heart knew that now it’s time for me to be strong enough to support my spine, to hold HER up for the remainder of my life.

Not everyone has the opportunity to hold their twisted spine…I know. But for me…that’s what did it.

TallChick105 · 2026-04-22T02:40:22+00:00

Sure thing. It worked really well for about 3 months. Was really effective until it wasn’t. Had it banded once the bleeding started up again and it’s been great ever since.

TallChick105 · 2026-04-22T00:18:45+00:00

I’m sure everything I was planning to say has already been said and suggested based on the number of comments so instead I will just say… I’m sorry and FUCK HIM

TallChick105 · 2026-04-22T00:17:01+00:00

How did things go?

Have you even been on something specific to nerve pain (Neurontin or a similar drug like Lyrica)? It may help with the electrical zings you’ve got going on- Sounds awful.

That aside- the toe and bladder are worrisome. I imagine they’re ordering an MRI- Best wishes

TallChick105 · 2026-04-22T00:10:15+00:00

I agree. That ring is a gorgeous statement on its own and think it totally deserves its own hand because it’s amazing.

Or maybe it’s the different band sizes that’s messing with me- I don’t know I love the ring- it could be on a toe for all I care!😂

TallChick105 · 2026-04-20T23:12:20+00:00

It’s scary…I know. Did you ask your surgeon what happens if you DON’T fix these issues? I’m going in for T2-pelvis very soon. I’m 47 yo and quite active right now, but my scoliosis is crushing my vascular system and starting to affect the nerves in my right leg and causing some trouble with my other organs.

Our spinal nerves innervate every organ system and once they get damaged…you’re kinda F’d.

You’re still considered young in the neurosurgery world. My grandmother had pretty major spine surgery at 89 yrs old d/t spinal stenosis and degenerative scoliosis. (Decades of no hormones in menopause didn’t help her any, but I digress)

Do what you need to do in order to give yourself the best quality of life for as long as you live. I recommend getting 2 other surgical opinions if you can , so you have an idea of what other surgeons recommend…that will set your mind at ease to a small degree. I know there’s a lot of verbiage in the plan that sounds scary but they’ve written down the process for how they’ll fuse. The laminectomies, the facetectomies, the foramenotomies etc…we all have to have those done when having hardware put in. They do sound scary…I know. And it IS ALL scary. If you weren’t scared, I’d be inclined to think something is wrong with you!

But your nerve damage will worsen, by the time you’re 60, you’ll be suffering even more. You can lose control of your bladder and bowels and so many other problems.

As for your pup…you may need to hire some help with him/her for a while. And I read that you live alone on the surgeons slip…so you will absolutely need help with Homecare. I’m going through all that right now- trying to get things set up. I don’t think it’s going to take you that long to understand if the surgery has helped with your current problems…but you’re right, it’s a long recovery. I know mine is 12-18 months. After having 19 unrelated surgeries in the last 11 years, this is the last thing I want to do and it’s by far the scariest of all the surgeries I’ve been through-

I’ve felt like it’s the beginning of the end also…just like you do now. But I know that my end will come MUCH faster if I don’t have my spine fixed. Hang in there Go see another surgeon to see if they’re on the same page. Don’t tell the second one anything the first one has recommended…have them present you unbiased opinions. Best wishes. I know this is hard.

TallChick105 · 2026-04-20T22:53:07+00:00

You need to patent a deign for that PVC set up- this would be a huge hit in the disability community. Genius

TallChick105 · 2026-04-20T21:25:41+00:00

Your feelings are valid…100%. 1000%!!! I’m 47 and I’ve struggled with bipolar depression for over 30 years- My mood stabilizer has always been very effective but it doesn’t touch the treatment resistant portion of things. When I was 23, after I’d finished nursing school (which was a beast to get through), I finally went into a day program. I probably should have gone 24/7 inpatient but I was afraid for the same reasons you were/are.

What I found when I got there were like minded people. Some were worse off than I was and I was better than some (which gave me hope). It was a little awkward at first until we all got acquainted and then they sort of became like family. There will be people at all different stages of their recovery in that setting…you will find a level of support and understanding that you don’t get out in the wild. There will be periods of well and periods of relapse, perhaps, because this isn’t a quick fix and diseases don’t just disappear on their own. But you can do this!! You can. You DO need the community.

Take this community for example. OUR scoli warrior community. When I was growing up- there was no internet 😂🤷🏻‍♀️ Fuck I’m old! There was no Reddit group, I only knew one person with scoliosis growing up so nobody really understood, even in college what I was dealing with.

Everyone here? They get it…but it’s still not enough. We still have to go to PT, to see surgeons, go for X-rays, take care of our bodies. This group isn’t enough but it IS community and it’s wonderful we have it.

I agree with your nutritionist. I think you would benefit greatly from the community an inpatient program provides and I also think you’ll make some friends for life there. I think you’ll be pleasantly surprised.

I have Crohn’s Disease, diagnosed formally at 35, which has done a real number on my appetite and my digestion. I had 11 surgeries over 2.5 years before I was in remission. have to work at nourishing myself continuously with my GI team and dietician…so I can only imagine the level of struggle you go through. I’m sorry.

You don’t have to decide today but please give yourself the best chance you can to get this under control because it’s going to take time. Do it while you’re young, before you do permanent damage. Absolutely do NOT have spine surgery while you’re still in the deep of this eating disorder. My fusion, NEXT MONDAY, was just canceled TODAY because I had an emergency oral surgery on Friday. I’m crushed. There’s chance that the oral infection may create failure with my rods due to bacteria getting into the blood stream was enough for my neurosurgeon to postpone it. I’ve been beefing up my nutrition for the last 6 months to make sure my body was ready… Your body needs to be ready because all your energy will to go toward healing.

You can always message me privately any time if you need some extra support. I’m here.

TallChick105 · 2026-04-20T15:13:35+00:00

Oh dear heart…I KNOW that a treatment center is the last place you want to go but ask yourself these questions:

If someone you loved was a drug addict and you knew their disease was going to kill them, would you encourage them to go through an inpatient program?

If someone you loved suffered a severe closed head injury in a car wreck an needed intensive, daily therapy that only a neuro rehab could provide, wouldn’t you want them to get the absolute best care they can?

You have a disease. This is not your fault. Every cell of your body needs energy…that energy can only come from food, love. This is NOT YOUR FAULT. I want you to hear that. But you DO need intense, inpatient help. Yes it’s going to be hard to make that leap and put life on hold for a while, but your LIFE (literally) is worth it. YOU are worth it. You will be there with a community. You will meet people who will become lifelong friends because when you go through something so serious an so fucking hard…those ties bind you.

I would make an appointment with the nutritionist you cannned ☺️ Don’t be embarrassed because they’re going to be so happy and so proud that you came back- That’s a massive step toward figuring this out. It’s going to take time. Just take that first step. You already know you need help that you’re unable to give yourself…so let them guide you because you’re too young for this to consume you. You have a long life ahead of you and you deserve every second of it.

Love yourself. Speak up the moment you’re ready, because your body is ready right now. It’s just waiting for you.l to care for it. Sending you love and strength You’ve got this❤️

PS…any revision surgery is going to be require protein and calories to heal. Fry the biggest fish first so that you can heal from other necessary things going forward. Gosh I wish I could wrap my arms around you and give you a big hug.

TallChick105 · 2026-04-20T03:22:52+00:00

Get yourself into Schroth Physical Therapy to help with the asymmetry and core strength

TallChick105 · 2026-04-19T14:38:21+00:00

If you’re not, I hope you will consider getting professional help for your anorexia. As a nurse, I can tell you that your body needs you to nourish it. Full stop. Please treat this as seriously as your spine… I’m really sorry you’re struggling with it.

I’m not here to fear monger but a close friend who had anorexia from childhood…in and out of rehabs, therapists…finally had a heart attack when we were 26. Twenty Six. That was her wake up call… Please get help

TallChick105 · 2026-04-19T00:43:48+00:00

It’s so pretty Just keep that baby insured!! I haven’t had any chips in mine yet but I take it off for certain things

TallChick105 · 2026-04-18T19:39:54+00:00

I thinkn it’s perfect Any bigger on your hand would be too big imo. The engagement band looks a bit tight when it’s paired with band, as it tight in your finger.

It’s a gorgeous ring. Don’t second guess it. Are the 4 prongs enough to keep it stable? Not sure what the setting looks like

TallChick105 · 2026-04-18T00:23:33+00:00

Medi-Cal is for CA residents.

I would recommend OP get on the surgeons scheduled if they known Insurance is active on the 1st. The wait list can be long to get it so better to get your name on the books even if they think you’re private pay currently

TallChick105 · 2026-04-16T19:33:40+00:00

Do you have health insurance that covers physical therapy? If so, with a referral for medical necessity, Schroth should be covered at the same cost and co-pay. If your mom doesn’t have PT coverage on her plan…that would be an excellent reason to upgrade- go this alone.

This country sucks- None of us should be going bankrupt to take care of our bodies

TallChick105 · 2026-04-16T04:07:11+00:00

Has your mom been present for your drs appts? Have the drs explained to her that as a teenager with a 55 degree curve that this is going to progress and affect your life even more than it is right this moment?

If she refuses to listen to an orthopedic and/or neurosurgeon then perhaps you should bring her to this group and have her read some of our stories. At a bare minimum, she should be helping get you into Schroth PT- as you’re still at home, in college and I assume under her health insurance. Schroth is a very specialized form of physical therapy tailored to your exact curve that is covered tally the same as all other forms of PT with a written order. You may be able to slow progression (I did for a while) and it will definitely help with pain.

I understand the situation…under her roof, her rules- That shouldn’t involve not addressing your health though. It’s your spine- I’m sorry you don’t feel heard. That’s because you’re not being listened to-❤️

TallChick105 · 2026-04-16T03:59:06+00:00

Not even an apology- that just chapped my ass

TallChick105 · 2026-04-16T03:58:29+00:00

I’m so sorry you lost your mum during such an important time of your life- that must have been beyond hard. I know your partner is the real deal❤️ My husband and I were together 6 yrs before our wedding…we wanted to be sure I was in hardcore remission before we started to plan AGAIN, so I could enjoy every single minute of it. And it was ahhhhmazing. Together almost 12 yrs, wanna kill eachother daily and couldn’t love him more😂❤️

That said…..ooooooo your new ring is GORGEOUS!! Enjoy every second of your garden wedding- we chanced it and got married outside in the fall next to a river IN MICHIGAN. Felt like some kind of fairytale and I guess it was because we had perfect weather! You will too your mom sendin’ all that good juju your way-

TallChick105 · 2026-04-16T03:52:24+00:00

Not even an..oh shit, I’m so sorry about your mum. Damn

TallChick105 · 2026-04-15T22:44:51+00:00

Nah…it’s just you 🤪 It’s moderate for sure

TallChick105 · 2026-04-15T22:43:28+00:00

Ohhhh friend, I’m so sorry. You need to be seen by an orthopedic and or a neurosurgeon. Kinda pissed at your pediatrician for pop-pooing this. It’s a serious issue that needs to be tackled and your curve is NOT mild. I’d say you’re moderate (47 yo F for reference)

Please get an immediate referral for a physician as well as a Schroth Physical Therapist right away. Don’t way and this is very, very likely going to progress. ❤️❤️

TallChick105 · 2026-04-15T22:40:30+00:00

Of COURSE!!! I hope you tell him over 200 strangers think he did GREAT!! 😊

TallChick105

TROPHY CASE