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View Full Version : Unexpected news today..help we need support



spincon58
02-11-2005, 10:16 PM
Hi Everyone,
Many of you know me I'm Connie and I have been a supported on this forum for some time. I just had scoli surgery in June , and I;m doing pretty good....When I found out I needed surgery , I ran to take my 12 year old daughter to the orthopedics..The first Xray she measured 19 lumbar...6 weeks later she measered 12...we were all so excited..the doctor said come back in 4 months...well bad news today..the curve shifted to 25 degrees..and he is advising a boston brace....My daughter took it very well...she's a trooper..but me I was crying all day, I was frozen in bed...I slept and cryed...I know its only a brace,....but I gave it to her..plus my other 23 year old daughter and my 21 year old son...so I feel like a killer of my own kids...I'm usually not so hard on myself//so whats happening now??She will not read anything on this forum...and bracing subjects are for patients under 18..so where do I write questions? I'm heartbroken...any encouraging words to help me.......and my daughter?

Carmell
02-12-2005, 12:04 AM
Hi Connie,

I have followed your own scoliosis surgery story since last summer, and I know you are still recovering and trying to get your strength and health back. Hearing your daughter's diagnosis only makes your own feelings (which are very raw still) come shining through. Please try to relax and take a few deep breaths each day. You need time to heal when you aren't worrying about everyone else (I know, easier said than done, I'm a mom too).

My 18yr old daughter has a lumbar curve with an upper thoracic curve and a significant rotation of the spine. She reached skeletal maturity around 14yrs of age. Since then, her lumbar curve has actually improved from 40 degrees to 33 degrees, and her thoracic curve has improved from 30 degrees to less than 20 degrees. The rotation is still significant, but for the past 2+ years she has had good xrays and exams.

My point is that your daughter is in the very early stages of dealing with scoliosis. It's scary, but it doesn't have to be all-consuming in thought. Allow her to be an active teenager who loves life. Hopefully her scoliosis won't continue to get worse. However, if it does, you have access to wonderful specialists to help, as well as great emotional support from the families here on the board. My daughter won't talk about her scoliosis, nor will she do any research on it. Boards like this are taboo to her. I understand. Feel free to vent here, as well as share your good news. Take care and please know we care!

phaden
02-12-2005, 01:49 PM
Hey Connie:

Parental guilt is a powerful force, isn't it?

1) Did you know you had scoli when you decided to have children? Were you informed in detail about the evidence that it is genetic? If the answer to either of these is 'no', it's hard to see how you can be held responsible.

2) Are your children clever? Do they have good verbal skills? Athletic or musical talent? Big brown eyes? Curly hair? There is evidence that all these things have varying genetic components as well. If you get to beat yourself up about the negatives, make sure you take credit for all the things your children inherited from you that will directly enhance their quality of life.

3) Bracing is not that bad. Honest. My daughter has been in hers 23/7 for 15 months now and IT'S NOT THAT BAD. She's really used to it. It hardly shows. It doesn't interfere with her life. It makes it impossible to wear revealing clothing. These are all good things.

4) While I wouldn't ever want to trivialise your concerns about this problem, which are strong and valid, Carmell's point about your own post-surgical fragility is a sound one. Have you ever lain awake worrying about something that seemed huge and unmanageable at 3.00 in the morning when it was dark and you were alone and your blood sugar was low, only to find that the next day it didn't seem nearly so overwhelming? Perhaps there is an element of that phenomenon at work here. You have coped with so much in recent months, that your coping supply is low, and this is hitting you hard. Perhaps you can give yourself a brief delay in assigning blame until your wee girl has settled into the brace and you see how normal her life is. By that time you'll be stronger as well.

4) Have a wander over to www.spinekids.com. Teenage scoli girl central. You'll feel heaps better reading their posts and seeing how calm and normal and happy they are (most of the time).

From your posts, and the way you approached your own surgery, it's clear that you've got a clear intellect and a lot of emotional strength. Just what's required to deal with a challenge like this. Hey, I wonder if your daughter might have inherited any of that from you....?


Patricia
Scoli Mum from New Zealand

P.S. I don't have scoli, but my daughter does. Nobody gets a guarantee.

ANIMAL LOVER12
02-12-2005, 03:41 PM
Hello Coonie.

I am a 13 year old and I wore a brace when I was eleven. It wasn't that bad. Really. At first I thought I would never get used to it but I did. Scoliosis runs in my family as well. My grandmother had it and then my dad and now me. Don't feel guilty.

You or your daughter should take a look at spinekids as Patricia said. I am on there a lot and I can talk to a lot of girls my age and they are a big help to me. It is a great place to vent out your feeling too. I know I have. There are a lot of girls there with braces that you and your daughter may like "talking" to.

lrmb
02-12-2005, 04:23 PM
Dear Connie,

I'm _so_ sorry your daughter's curve has gotten worse. But you can't blame yourself! There is no guarantee a child would develop the condition and in any case, as Patricia said, your daughter has no doubt also inherited many wonderful qualities from you - including seeing you have the strength to go through everything you have gone through.

I probably inherited scoliosis from my Dad's side of the family, and sure, I wish I hadn't, but neither my sister nor my brother have scoliosis, and I never, ever, wish I had had a different father. And, you have caught your daughter's scoliosis at a point when it can be braced, so you have a good chance to arrest the progression of the curve.

Look after yourself and don't be too hard on yourself. Get some rest if you can and keep in touch. ~Laura

spincon58
02-13-2005, 04:47 PM
Hi everyone,

I just read your messages, thank you all ...I began to think of what you all were suggesting, and your right....and if you take problems apart bit by bit it doesn't look half as bad as if you clump it in one big ball..like I did.....My oldest daughter yelled at me because I told my 12 year old with the scoli not to lift a heavy object because she had a bad back..and my oldest yelled at me saying I'm giving her a complex....I think she was right..
.Its hard to be the protector in a situation you have no control of....If her scoli shifts ..its nothing that I did...but....My 12 year old her name is Fortune....told me her scoli got worse because I temporary stopped her ballet classes(we started it up again)...When You said that my daughter has qualities that I gave her , it put a smile on my face..b/c she dances like an angle...she was once in a show for charity..it was a talent show and she was invited to dance..she was the only youth in the show....and there was a standing ovation with the ballet dance she did..I was so proud..she also made it to the dean's list...she did not have a grade lower than a 94 on her report card...she has long brown hair and brown eyes and a very bright smile(her braces just came off) she has tons of friends and makes everyone laugh....so what am I worring about?????
Animal Lover 12 Hi, thanks for responding..she won't go on any sights but she does have a friend that wears a brace..I guess they will connect stories soon...
Patricia, I knew I had scoli when I decided to have kids, but that woundn't have stopped me from having children..and yes...things can be worse...Carmell, hit it on the nose....my emotions are playing a huge part of this...and since I'm still recovering from scoli surgery anything remotely connected is going to send flairs up...Laura, mothers guilt is big and I have to deal with it...I did give it to her...so I will have to read all about bracing and if it can help stable a curve....Does anyone have any good websights???Does Boston brace have there own sight??? Should I have a scond opinion???if my choice is nothing or brace ..I would brace her...and hug her...
Thank you...I still feel sad, I know its only a brace, but my real fears are if ...and when ...and if....

+

ANIMAL LOVER12
02-13-2005, 08:53 PM
Yes boston brace has a website. The address is:

www.bostonbrace.com

spincon58
03-10-2005, 02:02 AM
Hi,
My daughter got her brace today..I was in such a numb state in the dr.s office today....she woke it for one hour and than had to sleep with it,,,,well so far she woke up once......it's 3AM now ...she has a good additute which is better than i can say for myself.....plus her 14 year old brother tried to punch her in the stomach and hurt is hand....the brace is small and only fits under her breast bone down below the hip..and she has to wear it for 16 hours a day...I think we're gonna be alright..thanks.

Mary Lou
03-10-2005, 07:31 AM
Sounds like you've made it over the first hurdle-getting her into the brace. It sounds like you guys are doing well considering it is the first day. You do know there will still be struggles in the future, but when dealing with teenagers, when isn't there issues to deal with? Trust in your daughter and draw from her strength. Kids are amazing and we Moms tend to worry a lot more than the kids do, but that's our job, right?

Tell her we are very proud of her for doing so well with her brace and to keep up the good work.

Mary Lou

spincon58
03-11-2005, 06:41 PM
Hi,
Small update , my daughter 13 just got her brace and she woke up the first night and sleep great with it on th esecond night..I hope this good additute continues..for the years untill she stops growing....Does the brace every come off even when they have more growing to do???

jc3
03-11-2005, 10:21 PM
hi connie
sorry to hear about your daughter needing a brace. I have 3 kids, which 1 you know just had surgery and i fear for my other 2. They are still too young to know if they too will have scoliosis. I wore a brace as a teen and never needed surgery so it was horrible to have my daughter have it and end up needing surgery when i didn't need it.
As for your question about whether they wear the brace until they stop growing, i think they do have to. It sounds like she is doing great so far.
How are you feeling?
I'm not sure if you read, but we just went for our 4 month post op!!! :)
I can't believe how quick it went. Oh, and i thought of you in the office, boachie got some new magazines - i laughed when i saw a whole bunch of "normal" ones.
Jennifer

spincon58
03-23-2005, 09:29 PM
Hi ,
Wow I have great news..my daughter has been wearing her boston brace for 2 weeks..first week only at night and the econd week she wore it 16 hours...so the dr. took an xray with her wearing the brace after 2 weeks and you wouldn't believe but her spine was straight!! It went from 25 degrees left lumber curve to 5 degree straight spine...I had a smile all day...so now we u7nderstand that it can work and it will work....my daughter wears it with no complaint....I'm lucky
I have been suffering with mycroplasma pnuemonia for the last 3 months ...and I haven't been able to shake it...the antibotics are not working and I'm afraid of what my dr. will say next/.......Its so hard to stay in bed but when i'm out I feel like i'm going to collapse....has anybody have this happen to them . ...walking pnuemonia,,,,,,and what was the outcome?

KRIS ATKINSON
03-24-2005, 03:39 AM
Congratulations on bracing! It's good to hear such good results from bracing in such a short time! Hope your own health gets better. I am 49 years old and had sinus surgery in 2001. I pushed my family doctor for a referal to the ENT, and the sinus surgery finally solved a lot of my chronic sinus issues. Good luck and thanks for the good news!

jc3
03-24-2005, 08:14 AM
hi connie
That is great news! And you are very lucky that your daughter is wearing it without a problem. It is so hard when they refuse to wear it. I'm sorry to hear you are still not feeling well. My daughter had walking pnuemonia and so did my neighbor. My daughter was fine quickly after the antibiotics and my neighbor it was a few weeks that she wasn't feeling great. Maybe the antibiotics are not working because it could be viral and therefore, antibiotics will not work on viruses. Is that possible?
well tell your daughter to keep up the good work, she should be proud of herself.
jennifer

ScolioGirl
04-05-2005, 04:03 PM
I have scoliosis, a brace, and the possibility of surgery drawing closer. The doctors suspect it's genetic since it runs in my dad's family. If it's any comfort to you, I don't blame my dad for anything. Really, everyone's raised excellent points. If you had no idea you had scoliosis and/or that it could be passed on from genes when you had children, you aren't responsible. In fact, I'm sure your children are glad that you've gone through scoliosis yourself and can help them with their questions/concerns about it. I sure wish there was someone I could talk to about things.

spincon58
04-07-2005, 01:06 AM
scoliogirl,
That was a great point....living with back pain is the worst ...who would want that on there children? So not knowing b4 you had them does not make you a guility person!!!
connie