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View Full Version : 89 degree curve makes a difference in your daily life!



Syd
01-16-2010, 07:30 PM
Hey again,
Yesterday my feelings really got hurt not just my back this time but my feelings and the thought it controls my daily life just like millions of other people that have scoliosis but have you ever had a time where you had to sit out and watch other people have fun while you couldnt because you have scoliosis well I know how you feel ! Well through out my life I have felt that pain of being left out becuase of school activities and P.E and others but yesterday it really hit me!! I was at P.E at the time and it was the day of the mile run and flag football and of course I had to sit out and watch the others have fun and perticipate but than I thought I will never have that feeling of having fun playing sports because of my scoliosis so I just sat there and cried because I knew that my scoliosis got more severe and the fact they cant fix my klipple fiel syndrome But the good thing was my friends care about me and me getting my coming up surgery and that is all what matters !! I have posted a 2 threads telling you guys about the surgery im getting and it is the fusion and Im excited but afriad though I had a couple questions about the surgery and they are when you do get the surgery how long does the iviey stay in your arm and does that hurt and a year after the surgery will you be able to jump on a trampeline and thing well activities like that and Also will the place where you get your surgery will it leave a scar ????

JenniferG
01-16-2010, 08:32 PM
I'm so sorry to hear about your sadness Syd. I'm sure after your fusion surgery, things will seem a little better for you. You have a whopping curve there for a young girl. It will make a big difference having it straightened out.

Syd, it's highly unlikely I'll ever jump on a trampoline again but I feel it's highly likely you will. Young people seem to get on with their lives from where they left off. I hope some other young people who've had the surgery in the last year or two can give you some advice, or even their parents.

As for the IV, I barely remember it. I think it was there three days. Keep asking the questions, Syd. The more you know the better you will feel about it all. Actually it is very exciting for you, because it will make a very big difference in your life, I believe.

JenniferG
01-16-2010, 08:34 PM
Oops, I didn't answer your scar question. Yes, you will have a scar, but in a few years it will lighten and not be so noticeable. Again, some of the younger patients might be able to tell you their experience. I did read once that a couple of years after surgery, one young girl said her scar was barely visible.

Syd
01-16-2010, 08:51 PM
Thank you so much for helping from the day I joined to today thank you!! Ya I am hoping that it will make a HUGE diference in my life but I know I have faith :) because other people have faith in me like friends and family and others ! And I will try my hardest to jump back from where I was :)
Thank you again nice talking to again ! I will remember your addvice for a long time I wont forget . Trust me I will need it

Syd
01-16-2010, 08:52 PM
Hey jennifer I had a question what happened with your back if you dont mind me asking?

ddb
01-16-2010, 09:00 PM
Syd - I'm also very sorry for how this is impacting your life. I do not have scoliosis, but both my daughters do. My youngest is due for surgery in Feb. She is also scared of things like IV's. I can tell you that I have has them, and once in place they do not hurt.

We will be touring the hospital soon where they will explain everything about what to expect. I think you should see if your hospital offers the same thing - I think must childrens hospitals do. My daughter is looking forward to the tour. She has many questions, like you, and plans to ask away. My hopes are her questions will be answered and that will put the scary stuff aside.

Dee

ShortEb
01-16-2010, 09:01 PM
Hey Syd,
I am hoping that after you surgery you won't have to experience the sadness of not being able to do activities that your friends can do. My scoliosis allows me to still do activities but I will be in quite a bit of pain for quite some time afterwards.
I haven't had my surgery either, but by the time I have it I will be 16 (surgery is planned for march/april this year - read my signature for more details). At the moment I am still 15 though. So even though I can't help you with post surgery questions I wish you the best of like for your surgery! If you need to talk just in general just leave me a message or something.
I hope one day your Klipple Fiel Syndrome can be fixed,
:D

Syd
01-16-2010, 09:24 PM
Hey dee thanks for the addvice about the iv's I have never had one and I dont want one either I dont like needels either as you can tell:)but I didnt know that they gave tours around the hospital do you just ask them or something ? And Im sorry to hear that your daughter has to get surgery too I bet its hard for her to ! I hope everything is going to go great for her during and after sugery tell her good luck and I will pray for her too!!

Pooka1
01-16-2010, 09:50 PM
Hi Syd,

I'm sorry about your sadness. Bad things, congenital syndromes, earthquakes, tsunamis, etc. happen to good, innocent infants, kids, teenagers, and adults and it isn't fair. Unfortunately there is no reason to expect fairness is life.

Please see my answers below to your questions. It is what happened with both my daughters and should give you some idea what will happen but may not be exactly how your surgeon will do things.


I had a couple questions about the surgery and they are when you do get the surgery how long does the I.V. stay in your arm and does that hurt

The I.V. will go in a little bit before they put you to sleep. It will stay in at least a day after surgery, maybe two. They will likely detach the tube from the needle at some point an leave the needle in (it won't hurt or bother you) in case they have to reattach it for some reason.


and a year after the surgery will you be able to jump on a trampoline and thing well activities like that

Now trampoline is one thing that I don't think your surgeon will let you do but he might so you should definitely ask.


and Also will the place where you get your surgery will it leave a scar ????

Yes there will be a scar. Neither of my daughters gives a hoot about their scar. My one daughter wore a low-backed formal dress to a school prom about 2.5 weeks after her surgery. I insisted that we should cover the scar for the sake of the other people, not because my daughter cared about people seeing it. Both of them seem to think the scar is a just something they will carry and doesn't really mater at all.

There is no shame in having had scoliosis surgery so why should they care? Rather they seem proud at having gotten through this and have frankly left the whole issue of scoliosis behind them, literally and emotionally. :)

Good luck. I think you are a great kid and will do well with surgery and in life. A while ago, I wrote to another kid who was feeling down about why she has scoliosis. Maybe something in that will help you... here is what I wrote to her...

---

I can't answer what my daughters would say but I can answer for myself as the mother of identical twins with scoliosis, both now fused.

I can give you a scientific answer and another type of answer.

The scientific answer to why anyone gets idiopathic scoliosis is that your DNA contains information that tells your body to grow a deformed spine. Scientists have found the first gene associated with idiopathic scoliosis just last year. They may find other genes.

Sometime in the course of human evolution over the last few hundred thousand years, scoliosis occurred for the first time and was passed on to subsequent generations. Maybe new cases spontaneously occur today, I don't know.

Now, beyond your DNA, I think you also want an answer as to why you personally have this scoliosis gene and why others do not.

Similarly, I could ask why my daughters have scoliosis and not their schoolmates. But I don't ask that.

The question makes no sense to me. Some questions have no sensible answer.

Just because we can ask something, just because we can state it as a question, doesn't mean there is necessarily an answer.

I get no comfort from asking questions with no possible answers.

I find comfort where I can. I find comfort that humans have done research and surgeons have perfected their skills so that kids with scoliosis can lead very normal lives. The truly amazing things in our world are the accomplishments of people in science and medicine who actually help people in real ways.

This is the only life we have. It's a shame when a kid has scoliosis in that life. It's not fair. But there is no reason why life should be fair. You can make yourself crazy wondering why life isn't fair. We have to try to maximize our joy and the joy of others in this life as much as possible. That is the closest thing to a purpose in life I can think of.

Our universe is about 13 billion years old. Our sun has about another 5 billion years left before it blows up. Not to worry because humans will be long gone before then. Also, another galaxy is heading straight for ours. That galaxy and ours will collide in several billion years. I am told you can actually see this other galaxy in the night sky now. Humans will not be around for that either.

Now does it make any sense to ask if any of that is fair to the earth? I don't think so. It just is what it is.

As Carl Sagan said, we are made of "star stuff." That is, the atoms in our bodies were forged in past star explosions. When the sun explodes, or when our galaxy collides with the other galaxy, our atoms will go back to being "star stuff." I find comfort in knowing that.

Take comfort and joy in what you can.

sharon

Sherie
01-16-2010, 09:56 PM
Hi Syd

Sheena also hates needles but it wasn't a problem. They didn't start any IV's on her until she was put to sleep in the operating room. Once they put the IV in, you won't even know it's there (I've had them too). That shouldn't be a concern.

Sheena has a scar, it's pretty long but it's turned white. I wouldn't lie and say you can't see it, but it's not bad either. She's not embarrassed by it, in fact, most kids don't seem to be.

I'm not sure about the trampolines, we didn't even ask but for sure, you need to get clearance from your surgeon before you do anything like that. Anything that would be jarring to your spine, you need to make sure it's ok before you do, otherwise, you should be able to participate in most activities.

Please don't cry, there is a light at the end. You will be amazed at how quickly the time goes by once surgery is over. :)

Take care

JenniferG
01-16-2010, 09:58 PM
#5 You are very welcome Syd. When I first came here I was confused and scared too, mainly of the unknown but being here answered so many of my questions that when the time came for surgery, I felt a lot more confident.

In answer to your question, I had scoliosis like you. I was 13 when diagnosed but back in those days the treatment was horrible. I was offered surgery without hardware then I would have been put into a plaster cast for up to 12 months. I know one woman my age, who was put in a cast in hospital, for 15 months. She is now very crippled, (her correction did not hold) which is very unfair after enduring such a lot at such a young age.

I was in my 50s (maybe late 40s) when my curve started progressing and it was becoming increasingly uncomfortable and I lost a lot of height. I was lucky my GP sent me straight to a scoliosis surgeon with a great reputation and I agreed to surgery at my one and only appt. As you can see in my signature, I went from 68 degrees to 22 and I am thrilled!

MitoMom
01-16-2010, 10:37 PM
Hey Syd,

I think if you asked every kid on here they would tell you sometimes they get frustrated at seeing what their friends can do at times and they can't. I'm guessing your school has a social worker that you can talk these feelings through because guess what? That's one place in your life and body and mind that you are absolutely NORMAL! Just like all the other kids here. :D

It's also ok to feel angry about it too. That's normal. It's okay to talk to your parents about your feelings because they need to know so they can help you work through these feelings.

Here's a secret Syd.....even the grown ups on this forum have these feelings to....so you are not alone.

About the IV's, ask the person starting your IV to put some numbing cream on the spot where she wants to put the needle. Then ask her to use a Tegaderm patch on top of it to hold the numbing cream in place so it doesn't get rubbed off while you wait for it to work. Tegaderm looks like a piece of very big scotch tape or a clear plastic label on an envelop.

Then when the numbing cream has had it's time to work, the nurse will peel off the Tegaderm (that's doesn't hurt) and wipe off the numbing cream and clean the spot with an alcohol wipe. Your skin will still be numb and they will put in the needle and it shouldn't hurt. The very best thing about having an IV is that EVERYTHING usually goes in that IV even your medicine for pain. If they need lab work, they usually can take it from the IV too. No extra pokes.

I bet you've had a lot of lab work done too because of the Kline-Felter syndrome. John has to have a lot of blood work done because they have to check the level of medicine for his seizures. He may be 20 but he still wants to hold my hand which is okay. Sometimes he likes to hide his face behind his coat and other times he just shuts his eyes. He also has his very favorite lab person do the needle poke. She's drawn his labs for over 14 years!! If we are in the building where the lab is and he doesn't have to have lab work done, John will still go in and say HI to her and they have a good laugh.:D

jrnyc
01-16-2010, 11:00 PM
Dear Syd
this probably wont help you now..i wish it did...but when you are all grown up..when you are in your late teens, early 20's, late 20's..none of that gym stuff will matter...you will probably be so far removed from that stuff...you may go on to do great things in life..things that are satisfying to you in your life...you may be the most popular girl in your college...you may develop skills in sports that are OK for your fusion to handle...you may be the smartest girl..the one who excels in certain subjects....none of what went on in high school will matter...

as for now...as Sharon & some others said...there are lots of things in life we cant explain, or that there is no good explanation for...some people have DNA, or the kind of genes, that lead them to drug or alcohol addiction..some lead them to depression or other mental illness problems..some are really lucky & dont appear to have any tough difficult stuff in their DNA or their genes...we dont always know what others have to deal with in private, behind closed doors...just what we have to deal with....and it may not help at this minute, but you will grow up to be far stronger & tougher & able to cope than lots of other kids will...

if the scar bothers you for now, you will be able to hide it or cover it...at some point in your life, you might even display it proudly...but it will not become an issue...clothes or body makeup can hide lots of things...scars get lighter as the years pass......

i had an IV in me for over a year when i had Lyme disease...i got so used to it that i forgot it was there...after they put it in, it really doesnt hurt...just an annoyance to be careful not to pull it out by accident...you wont need your IV to be in for long....

ask any questions you want on here...i have not had my surgery yet...am having another consult in CA january 27....but the people on this forum, both those with & without surgery, are the best...they will tell you the truth & be there to write to & get support from! the other thing to remember is that kids seem to heal much faster than older people do when it comes to fusion surgery....they are back at school & other activities way faster.....and then you will have all those great years ahead of you to enjoy being healthy...you are making the right decision....and are very smart to take care of this now! maybe some time in the future your other health problem can be addressed...medicine is doing & learning wonderful new things all the time!

best of luck
jess

Syd
01-17-2010, 01:30 PM
Thanks shorteb for the addvice ya I hope I will be able to join my friends one day but for now I will be watching I know that sports wont matter in the future when I get older but I at least want to play once with my friends well thank you so much and I hope your surgery will great and get you out of pain!:):)

Syd
01-17-2010, 02:24 PM
Hey sherie thsank you again for telling me about the scar and the iv's but the scar will turn white how much time will that take like a few years?

Sherie
01-17-2010, 02:44 PM
Hey Syd

It was less than a year. It's dark red at first, then gradually turns pink, then white. You need to protect it from sunlight though, use plenty of sunscreen if your back is exposed to the sun. :cool:

Syd
01-17-2010, 03:15 PM
Thanks sherie I will make sure I do But I will have Im not a big fan of sun screen though haha

Syd
01-17-2010, 04:05 PM
hey jennifer Im sorry to hear what has happened to you but has the surgery helped you make your life a little more painless for your bak?

RitaR
01-17-2010, 05:05 PM
I agree with the 80+ degree curve affecting your everyday life. I spend most of my time either sitting out when others are doing something fun. I want to go shopping and sometimes give in and just go, but I am soon sitting on the bench watching the other people shop. I am so tired of letting this back of mine rule what I do, whether I sleep or not, etc. But, only for now - not forever. When we have our backs fixed we will get even and get our life back. That's my confidence line speaking here. Trying to convince myself probably.

Pooka1
01-17-2010, 05:31 PM
When we have our backs fixed we will get even and get our life back.

That's precisely what happened with both my daughters. The surgery not only saved their confidence and self esteem but also arguably saved their life.

Syd
01-17-2010, 05:36 PM
I agree with your opion too it controls what do and what we can to if I want to walk through a mall for a hour or two Than I start to hurt than I have to quit because I have to sit down but after the surgery that will make a difference and for you too!:)

Syd
01-17-2010, 06:29 PM
hey mitomom,
thanks for telling me that there are people that feel the same way that I did that made me feel not alone anymore !:) And are you and john colt fans?:)

Syd
01-17-2010, 07:09 PM
hey sharon,
thanks for helping me with everything I neede the info about the scar and they others ! I am gaining confidence slowly but with fair:)

MitoMom
01-17-2010, 08:13 PM
Hey Syd,

Good luck next week. We don't have any favorites.

Syd
01-17-2010, 08:21 PM
thanks mitomom,
Hopefully there will be great news for the sleep apnia test also you and john dont have a favorite team ? I am obsests with the colts they won! do you have a favorite baseball team ?:)

MitoMom
01-17-2010, 09:59 PM
We are dyed in the wool Detroit Tiger Fans. Opening Day of Spring training is one month away. Have a good week.

Syd
01-17-2010, 10:04 PM
I like that team and the st.louise cardinals :)

Syd
01-18-2010, 08:16 PM
Hey jennifer after your surgery did most of your back pain get relieved??

Karen Ocker
01-20-2010, 07:39 PM
I have NO back pain and I am much older than you and had a revision.

Syd
01-21-2010, 09:13 PM
Really i am sooo happy for you !:)