spinecor

[txmarinemom]

5k

Yep ... 9 a.m, GMT-6 (CST on the day Daylight Savings Time changes).

It's a walking 5K.

I HATE running (outside basepad to basepad playing ball). I MAY just take it up (grumbling every step) because I CAN, *when* I can. (about another 4 weeks!)

Regards,
Pam

[jillw]

Pam, I'm a little confused, you say you had no choice wearing your brace when a teenager but i thought i read elsewhere that you said your compliance with wearing your brace when you were a teenager was very bad? Maybe I'm confusing you with somebody else...

I thought this board was supposed to be a place to not only learn things, get and offer encouragement, but also, when needed, vent. I thought this was the one place one could say what was truly on their mind related to their scoliosis even if they are feeling down?

[jillw]

Danielle, I'm very sorry to hear that your issues were compounded by people who were jealous of the "attention" you were getting. Hang in there - I hope the brace does great things for you - not just your spine, but the wonderful resiliant compassionate person you will turn out to be because of having gone through this adversity. Good Luck!

[wnorm]

SpineCor

I apoligize for my insensitive complaining about the brace. I should have kept it to myself considering all those out there who have it MUCH WORSE than I do. I guess I need a mother to complain to. Please anyone out there considering a Spinecor Brace please get one. My back feels great with it on, and my neck doesn't hurt as much . It's true what txmarinemom said about wearing the brace in public. No one really cares what you look like. Thay forget about it in a minute but we have to live with the pain of scoliosis.

To the subject of quantification. Since I was not asked to do a log or journal I don't see how use in adults can be quantified. Dr.Marcotte asked if she can use my case for her research. Good point. I have an M.Sc. (Aquatic Toxicology). Random measurements without standardization have no statistical significance.

[txmarinemom]

Pam, I'm a little confused, you say you had no choice wearing your brace when a teenager but i thought i read elsewhere that you said your compliance with wearing your brace when you were a teenager was very bad? Maybe I'm confusing you with somebody else...

I thought this board was supposed to be a place to not only learn things, get and offer encouragement, but also, when needed, vent. I thought this was the one place one could say what was truly on their mind related to their scoliosis even if they are feeling down?

jillw,

I got my brace LONG before my teen years (I was diagnosed at age 10).

I did wear it (no choice ... my parents actually had the teachers check me) the last part of 5th grade/ALL of 6th grade - and I had nowhere to hide it anyway if I removed it. Non-compliancy began as soon as I hit Jr. High and had a sports locker in which to hide it away.

Venting is fine, but on THIS topic? Sorry, I just can't manage to be supportive of statements like "I have to accept the fact that looking like a reject from a junk yard will be my fate in life forever." by a 55 year old woman who *chose* this option.

Imagine reading that as a kid on here.

wnorm, I apologize for jumping on that with both feet, but I only WISH finding clothes that fit was my worst memory from my brace.

Pam

[Allegra]

junk yard? haha

wnorm,

i completely understand how you feel.
even if it was your choice, you have a right to vent anyways.
it's probably harder to have a brace as a teenager, but easier to find clothes.
the spinecor works great with leggings and a dress, or jeans and cute shirts.
but i'm not sure what older people would wear with it, especially if you had to wear business suits or something.
why do you have one again?

[wnorm]

SpineCor

Dear Allegra,
It was nice to hear a few kind words after the lashing I took for venting about the brace. I thought a forum was meant for venting. I guess I was wrong. How do you find wearing the brace? How long do you have to wear it? Adults like me will have to wear it the rest of their lives. Ihave a curve of ~45 degrees. The last few years I have been getting a lot of neck , back, hip, knee, etc pain. I have had a herniated disc in my neck. I have osteopenia, bursitis, osteoarthritis, tendinosis, inflammation of the sacro-iliac, constant migraines, etc mostly related to my untreated AIS. I am wearing the brace for pain relief and to retard collapse of my spine. The x-rays already show signs of collapse. I was supposed to have spinal fusion in a few years prior. Maybe now I won't need it. Who knows?

[Susie*Bee]

wnorm-- good luck with the brace! I hope it provides a lot of relief for you. Yes, we do tend to get a lot of "extras" on our lists of challenges as we age, don't we?!!!

It makes me chuckle to think of you wearing clothes like Allegra. What an encourager, though. That young lady has a lot of empathy. Wouldn't that be fun to wear clothes like she does? I have noticed recently how the young styles are getting back to being more flattering for kids that aren't the super thin type. I like the slightly looser look rather than form-fitting/stretched to the extreme.

Hang in there. Keep us posted with how your body adjusts to the trials of wearing your brace -- it sounds like quite a challenge.

[wnorm]

Spinecor

Dear Susie,

Thanks for the encouraging words. You sure went through a lot. How are you feeling? Do you have to wear a brace now?
I can't wear loose fun clothes. I am very short and conservative. Tall women I think have an easier time of it.

Good luck and best wishes

[Susie*Bee]

I'm feeling pretty good. Thanks for asking. I gave a little more detail in the adult 1st surgery forum a few days back-- 10 month appt. thread. I wore a TLSO brace for about 4.5-5 months post-op. It was hard when I weaned off it-- it had been giving my back all its support, so it was very fatiguing to not have that anymore... but I got through that part ok too. Any of you girls reading this--don't worry. It's because I'm older and had all those muscles cut during surgery. So you won't have that problem. Besides, I am pretty strong now. (or like to think I am! ) So it doesn't take all that long, even for someone like me.

wnorm-- I didn't think you'd really wear those loose fun clothes. It just sounds fun. I wear "age appropriate" clothes too. It goes with the territory... Take care!

[Allegra]

spinecorrr

wnorm,
I would totally get a fusion if it would help your conditions, but only if the spinecor wasn't doing anything.
I got the brace last september but i didnt even start wearing it until late october/november. My parents told me i had a choice and then got it anyways, most likely to clear their consciences, but there were no xrays, no Spinecor Assissted Software, no nothing.
I spent about two years before this researching scoliosis and learning about spinecor but it was still a big thing for me.
Then i started getting used to it and actually wore it for a while, but my parents still havent taken me for xrays and they're not following the spinecor plan. I guess i felt like since they werent taking it seriously, why should i?
I don't know. But i wear it to bed every night.
However, I'm a little scared to wear it a lot because i could potentially create a worse curve. it's not an excuse, i read a story on here about a person (icant remember who) who waited to go back and ended up making their curves worse. If i could get it readjusted and get some xrays so i know it's doing something, i would totally wear it more, because it's not that hard to hide.
Sorry for the long post, i just don't know what to do.

[txmarinemom]

wnorm,
I would totally get a fusion if it would help your conditions, but only if the spinecor wasn't doing anything.
I got the brace last september but i didnt even start wearing it until late october/november. My parents told me i had a choice and then got it anyways, most likely to clear their consciences, but there were no xrays, no Spinecor Assissted Software, no nothing.
I spent about two years before this researching scoliosis and learning about spinecor but it was still a big thing for me.
Then i started getting used to it and actually wore it for a while, but my parents still havent taken me for xrays and they're not following the spinecor plan. I guess i felt like since they werent taking it seriously, why should i?
I don't know. But i wear it to bed every night.
However, I'm a little scared to wear it a lot because i could potentially create a worse curve. it's not an excuse, i read a story on here about a person (icant remember who) who waited to go back and ended up making their curves worse. If i could get it readjusted and get some xrays so i know it's doing something, i would totally wear it more, because it's not that hard to hide.
Sorry for the long post, i just don't know what to do.

Allegra,

I realize you are trying to do what your parents SHOULD be handling (I *totally* do not understand them getting you a brace and then dropping the ball), but you are risking serious damage to yourself.

You'd be better off with NO brace than wearing a brace incorrectly.

How exactly do your parents justify their lack of involvement??

[Allegra]

my parents

txmarinemom,

I really don't know what to tell you.
I don't think they understand its a serious problem.
My dad always says "do your homework" not meaning it literally, but to research everything.
in 7th grade, my parents signed this paper saying i could be exempt from taking the middle school scoliosis test.
but i was convinced i had it, so i researched it for 2 years.
and i found this forum and read all 400 posts on this thread. they never believed me until i had to get a cheer physical last april.
then i got xrays in august and then the spinecor.
but it just took a back seat i guess.
my dads been really busy (he's a lawyer)
and my mom has been stressing over her job (shes a music teacher in CA and might get laid off)
and my mom said she didn't care considering i didn't and would worry about it over spring break.
wow i'm tearing up right now...it just makes me so mad that they dont understand whats going on, and i'm so scared it's getting worse.
i know i was uncompliant in the beginning, but im still a child. i guess i can't even make one mistake. i just wanted to know exactly how it was working and the degrees i had. why would i put it on if i didnt know how it was affecting me?
i was only supposed to have to wear it this year, but i have no idea what's going to happen.
at least my back is super flexible.

well, i think i justified my side at least a little, even though my parents think i'm some ungrateful selfish child. haha.

[txmarinemom]

txmarinemom,

I really don't know what to tell you. I don't think they understand its a serious problem. My dad always says "do your homework" not meaning it literally, but to research everything. in 7th grade, my parents signed this paper saying i could be exempt from taking the middle school scoliosis test.
but i was convinced i had it, so i researched it for 2 years.and i found this forum and read all 400 posts on this thread. they never believed me until i had to get a cheer physical last april. then i got xrays in august and then the spinecor. but it just took a back seat i guess. my dads been really busy (he's a lawyer) and my mom has been stressing over her job (shes a music teacher in CA and might get laid off) and my mom said she didn't care considering i didn't and would worry about it over spring break.
wow i'm tearing up right now...it just makes me so mad that they dont understand whats going on, and i'm so scared it's getting worse.
i know i was uncompliant in the beginning, but im still a child. i guess i can't even make one mistake. i just wanted to know exactly how it was working and the degrees i had. why would i put it on if i didnt know how it was affecting me? i was only supposed to have to wear it this year, but i have no idea what's going to happen. at least my back is super flexible.

well, i think i justified my side at least a little, even though my parents think i'm some ungrateful selfish child. haha.

I always swear I won't post at 2:26 a.m., and I'm not changing any of my gut reaction text. Melissa, however, brings up some valid questions in the post immediately following this (and I've no clue - I fully admit - how the entire Spinecor system works).

All I could think in my insomniac state in the the wee hours was "OMG ... they aren't doing what??!"

I'll be following this with interest. Major soft spot for kiddos and animals, and I hope this wasn't as bad (parents "too busy" to raise kids) as it sounded ... *sigh. One case, however, is one too many - and there are far, FAR too many . ~Pam
__________________________________________________ _______

Allegra, that's just awful ... I'm so sorry. No kiddo deserves the treatment (or lack of) you described, and what you described could even be deemed negligence.

Even if you were uncompliant to start that's NO excuse for your parents to be "too busy" or "too stressed" to attend to your medical needs as their child. You shouldn't feel you have to make excuses for them ignoring your health needs because they're busy, stressed, whatever ... we ALL are. Taking care of you is their job as your parents, and that job should be their first priority.

Did I understand correctly your mother said she would do *something* over spring break? Does she mean "something" once (as in a single visit), or "something" like regular visits? If so (to either question), spring break is soon, right? Has an appointment been made yet?

Do you have a close relative or adult friend with whom you can discuss this? If your parents have insurance, maybe you could just arrange your own visits to the doctor with a little help from an adult??

I'd also offer a gentle suggestion you think about working some of this through with your school counselor. If I've understood you accurately, you're blaming yourself (with what sounds like their help) for some of this.

Please keep posting on how this comes along, hon. You have rights and protections. While many can't *afford* medical treatment, what you described (their refusal to take you to the doctor) sounds more like some form of punishment vs. lack of funds. That's completely different.

You certainly deserve better.

Best regards, (and a big hug).
Pam

[MATJESNIC]

Allegra,

My daughter wore a Spinecor for 18 months so I do know a bit about the brace. I have never heard of anyone getting the brace without having had x-rays, been properly fitted, etc. Unless someone handed you a brace that they were done with, how exactly did you get this brace? From an orthopedic, a chiropractor? Where exactly? I really am trying to understand and to help you with this problem. Could you please explain?