View Full Version : i'm worried

30th June 2004, 04:51 AM
today my mom mentioned that my younger brother and sister will be coming to my august appt. with me. i asked why. Well, apparently they both have at least a small curvature. I'm so worried that they'll need braces or surgery. Partly for them, because i've been through so much and couldn't bear to see them have to go through all this. but (as selfish as it may seem), mostly for me. Because, honestly, I don't think I could deal with the constant reminder. I mean, it's hard enough to have to tell everyone my mom's ever met who has a daughter having surgery all about it, but to have to be constantly helping them... i don't think i could deal with it. also, i know it sounds weird, but I really was emotionally scarred by my brace. I can't even look at it without crying. So it would just be so difficult to see one of them in one. I know it'll probably turn out to be nothing and they'll probably just be observed, but I'm still so scared. the main thing is that I feel like watching them go through it would be like me having to go through it all over again. which would just be too hard.

30th June 2004, 12:23 PM
Hi Marti,
I really had no idea that you found your treatment that difficult to endure.If it's any consolation many people here feel exactly the same.
Bracing through your teenage years is so soul destroying and you were far stronger than you thought to have come through it and have had successful surgery.
Most likely your family will escape without any intervention....your parents are most likely being extra cautious because of your history.If you feel upset about it I think your Mom will be a bit worried too.Many parents feel overwhelming guilt that they've somehow passed on the condition to the most special people in their lives.namely their children.
Hopefully the appointment will show nothing significant and you should be pleased that your mom is being such an excellent parent to give your siblings such great medical care.She's obviously facing up to the realities of scoliosis and dealing with it in a very informed and intelligent way.
If you can, you must try to be strong for your siblings.Sometimes you have to cover up to protect their feelings.They're probably not too impressed with the prospect of a brace either.Good luck with all the appointments, I hope it's good news all round.How old are the children Marti?

30th June 2004, 12:25 PM
I hope it turns out to be nothing to worry about at the appointment Martha. And I can really see how difficult it could be for you - I don't think it's selfish to be scared as to how it will affect you, you can't help it if you're having a hard time with it all anyway without this being added to it :hug: I wish I knew what to say, but you've always got us here as a listening ear if nothing else, so hopefully that helps a bit :-)

30th June 2004, 01:07 PM
Aw Marti, I think I can empathise a little with what you're going through .. way back when I was still in school, and in the pre-surgery stage, my mum told me that my little brother was going to be attending my next appointment at the hospital. I was really scared, firstly for him in case if he would be diagnosed with it too, & if it would be as bad as what mine was (way past the bracing stage and straight into surgery talks) and then secondly, just if I would be able to deal with it and help him and support him .. much like what you have written. And I'd imagine your fears and worries would be compounded a bit more by the fact that it's not just your brother, but your sister, too!

I found a good thing to do for me was, trying to divert and change all the energy I was devoting to being scared and worried into positive thoughts .. like "my brother is going to be okay" and "even if my brother isn't going to be okay, we're all here to help him through it" and "I will have the strength to help him .. and even if I don't, that's okay, too." I understand it sounds kinda dorky, but it really helped me if I would just take a little time out each day, light some candles or whatever, just generally get into a nice, quiet, reflective space and repeat those types of things. If any bad thoughts or energies would get inside my head I would just push them away, or at least if I couldn't do that then I'd let them in but I wouldn't let them consume me. Because you know, it is okay to be scared and worried sometimes! It's only human. =)

And that leads me to another little thing .. well I'll try to keep it small and little anyway! Don't beat yourself up about being selfish .. to me, I don't even think you're being selfish. The majority of the time, scoliosis is an ongoing battle that varies from person to person all across the world. I don't think any two people with scoliosis have the exact same physical, emotional and spiritual battle (just like I don't think any two people have the exact same personality attributes and whatnot) .. in that sense it IS all about the self. And individuality. And with that "constant reminder" as you put it, then your self and individuality and battles are threatened .. which in turn could perhaps make you feel even more worried and scared .. if that makes any sense. I don't believe you're being selfish at all. And if anyone else does send them my way! You're such a sweet little thing and I can't bear to watch you beating yourself up about that.

Much love,

30th June 2004, 06:53 PM
I dont really know what to say because the brace wasnt that bad I just didnt wear it if I didnt want to and I doubt if your catching their scoliosis this soon if its not too bad they can go to PT or it will just not curve anymore? I dont know I am sorry its difficult to see any family member or friend oing through the same thing you had to go through and I am sorry

30th June 2004, 07:39 PM
sins, my brother is ten and my sister is 13. Still plenty of growing time left for both of them.

2nd July 2004, 05:43 PM
Marti, I coudlnt imagine if my siblings had to wear a brace. First of all it would be a constant reminder and I would be scarred for them If they do have to get one, they will be turning to you for advice and you can help them get through it. Good Luck and remember, you are catching it early which is a good thing

2nd July 2004, 09:30 PM
They are quite young Marti but not all cases of scoliosis progress.Many people have small undetected curves which are never noticed or require treatment.Hopefully that will be the case with your siblings.

3rd July 2004, 05:24 AM
yeah, I wish I didn't have to wait until august to find out though. I guess I'll just try to forget about it until then...

3rd July 2004, 05:43 AM
They do say that siblings have a greater chance of having scoliosis...

However, my sis is 14, they have been watching her ever since they have been watching my back. (I was 12, she was 8). She has always had a mild curve... but over the yrs, it has only worsened by about 2 or 3 degrees.. a change so slight they do not even record it. I believe her total curve now rests at 8 degrees.

3rd July 2004, 05:44 AM
She was 8. Ha- Love how the emoticons just randomly pop up.

3rd July 2004, 06:57 PM
I understand Marti, I feel the same way when I think about my sister. Sh's only 10 and though she's never been officialy diagnosed with NF, we're pretty sure she has it because she had cafe-au-lait spots. She doesn't have scoliosis yet and I really hope she doesn't get it, for the same reasons you said. And if she got it we'd probably catch it earlier so I worry I'd be kinda jealous. I mean I never saw a surgeon till my curve was 45 and she'd see one ASAP if we even thought she might be getting scoliosis. Whcich means that she'd get a brace and I wouldn't be able to help her so much because I never wore one and I'd also worry that she wouldn't wear it because she never really understood how hard the surgery was for me or how much pain I was in and how I still have problem esp. with my shoulders. So what if she looked at me and thought that the surgery wasn't so bad so why should she bother trying to deal with the brace?? Anyway.

Try not to wrry Marti. Don't follow my example!! And Sins is right, not all cases progress. We were just the lucky ones!!

4th July 2004, 08:47 AM
Joy, do you have NF? Type I or Type II? I was diagnosed with a vestibular schwannoma about three years ago (when I was 28). So far it appears to be of the sporadic variety, but sometimes I look at the 'tags' that keep popping up on my mother's eyelids, or I'll have to make her switch the telephone to her other ear when we're talking because she can't hear me, and I wonder if I might expect more tumors in the future. I wish I could convince my mother to have an MRI to make me feel better. She keeps making excuses, though. It's really very frustrating.

22nd August 2004, 10:44 PM
My doctor's appointment is tomorrow. I'm not very worried for my sister, as I can't see anything and she's a stick. But I'm really worried about my brother. On the family vacation I saw him quite often without his shirt on and I could tell that his back wasn't straight. I'm just praying that it's that he wasn't standing up straight. I'm jsut so frustrated though. After my last appointment I was expecting no more bad surprises. And now we seem to be starting the whole thing over again. please Keep my family in your thoughts tomorrow everyone... I'm really worried about my brother.

22nd August 2004, 10:49 PM
Awww give them both a wee hug from me :squeeze: I hope things go okay.

22nd August 2004, 10:50 PM
i will be thinking of you and your family tomorrow give your brother my luck
hope it all goes
let us know how it goes :hug: :squeeze:

22nd August 2004, 11:04 PM
You will be in my thoughts tomorrow Martha


22nd August 2004, 11:29 PM
I hope the best for your siblings tomorrow. Please let us know how it goes.

22nd August 2004, 11:38 PM
You and your family are in my thoughts, Martha. Good luck! :hug:

23rd August 2004, 12:28 AM
Let us know how it goes Marti.We'll be thinking of you.!

23rd August 2004, 01:03 AM
Best of luck, Martha. Whatever the results are you know that they will be okay.

23rd August 2004, 03:09 AM
Good Luck Martha.. you will be in my thoughts!

23rd August 2004, 03:20 AM
Sending best wishes to you and your family, Martha!

23rd August 2004, 06:01 AM
Thanks guys. I'll be sure to tell you what happened tomorrow evening when I get home.

23rd August 2004, 11:31 AM
Be sure you do. My fingers are crossed!

23rd August 2004, 12:15 PM
Hi Marti. I think your mum (is that mom in the states) is probably just being a good mum and doing all she can to see to the well being of her children. Everything could turn out fine like you say. Its better to be observed than ignored. I hope all goes well for you.

23rd August 2004, 07:26 PM
In my thoughts! :squeeze:

24th August 2004, 12:15 AM
Thanks guys! Good news... My sister has what's called a false positive, which means her spine shows up as being curved, but it's just because she grew three inches this past year and has tight hamstrings. Joe has a lumbar curve, but it's because of tight hamstrings. They're both going to do physical therapy and hopefully it'll all be good!

24th August 2004, 12:20 AM
I'm glad it turned out to be a positive appointment. Way to go! :niceone:

24th August 2004, 01:01 AM
I'm so relieved for you and your siblings! Hopefully, they will remain stable and won't need the treatment you did.

24th August 2004, 01:25 AM
yeah, I'm really happy because my doctor said that he highly doubted their curves would progress.

24th August 2004, 11:43 AM
That's good news Martha :niceone:

24th August 2004, 01:07 PM
Fabulous! :-D

24th August 2004, 01:55 PM
*Big hugs for Martha* :squeeze:
We told you it would be fine ;-) Bet your family are thrilled about it.

24th August 2004, 09:48 PM
Great news! I am glad everything worked out..
Just a question though- is their spine curved on the xrays? Will it eventually straighten out?

24th August 2004, 10:09 PM
That's great news - you must be really pleased.
Take care of them both

24th August 2004, 11:12 PM
Great news! I'm glad everything is ok.

24th August 2004, 11:34 PM
Brilliant news Marti :D

25th August 2004, 12:08 AM
Carly- I think that both of their spines are curved on the xray, but my mother made it seem like they would straighten out. I wasn't in the room when the doctor was talking to them though, so I'm not exactly sure on all the details.

25th August 2004, 02:36 AM
*hugs* you must be very relieved.

25th August 2004, 06:13 AM
I'm thinkin of ya!

25th August 2004, 12:42 PM
great news Marti i am so pleased for and i bet your family is relieved


25th August 2004, 12:49 PM
I couldn't imagine going through the same thing again, even if it was a family member. Must be a wonderful relief! :-)