What Should i do?

[Emily]

Hello,

This is Emily and i have a question to everyone that reads this. My doctors say i should i have surgery on my back because, both upper and lower of my curves are at 60 degree's and i am only 17 right now. I have known about my back since the 6 grade and now i am in 12 grade.

I dont have a lot of back pain. But my doctor told me when i get about 40 i will have breathing problems and lung problems and that scares me. So i am not sure what to do about the hole thing.

I would like it if someone would tell me what they think...


Emily

[jc3]

Hi emily,
I think your dr is right. My daughter just had surgery for a 61 degree curve and i know they say if the curve is above 50 it will continue into adulthood. I know surgery is a scary thought, but you don't want your curve to continue to progress and interfere with your lung capacity, etc..
If i were you i would definitely get another opinion or a few other opinions before you jump into surgery.
good luck
jennifer

[Emily]

Thank you for relplying. The thing is that i am scared if i have it done that i wont be normal. Or i cant live a normal life? Does your daughter say that she wishies she never did the surgery?

I am going to get a second opinon. But I want to live a normal life. Like in 1o years or so i would want to have children. I dont want them to have what i have. Or i be in pain when i am carring them, or durring the 9 months have problems.

[jc3]

hi emily
There are so many people on here that have had surgery and lead totally normal lives. I think if your curve continues to get worse and you don't have surgery you eventually may not be able to lead a normal life because of the things it can do to you. I know cosmetically my daughter did not look right. She had a big rib hump and now that looks great. It is too soon since my daughter just had the surgery last week to say if she is glad she had it, but i think when she is pain free she will be glad she did it. She did not want to have the surgery but with a 61 degree curve it is something we had to do for her. I think if we didn't do it when she was older and it got worse she would be mad that we didn't have her do it when she was still young. I know that it is easier to recoup when you are young as opposed to someone older. Surgery is a tough decision to make and it is a big surgery, but i think you should talk to some more people who have had the surgery and are pain free. This board is really great.
any other questions don't hestitate to ask away.
jennifer

[mumof5]

My daughter had her sugery 6 months ago. She is glad that she had it done. Of course there are some things that she can't do at the moment and some that she will never be able to do. But there are ways around every restriction that you find. I have heard a few people now that have had normal pregnancy and births after having scoliosis surgery. I had also asked my daughters doctors about it before she had her surgery and they all said that there shouldn't be any problems.
Don't just go along with the first doctors opinion, get as many as you can. If they all tell you the same thing choose one that you feel comfrotable with and that answers all the questions you have.
Best wishes.
Cheryl.

[susannajon]

Hi Emily,

The good news is that this is not an emergency. There is no reason to rush into surgery. Get at least three opinions, and take your time. You are young and healthy and not in pain.

The bad news is that as you age, the curve might progress, and it will definitely become more rigid (more stiff and harder to straighten out), and your vertebrae will start to erode, and you may experience things like nerve damage, arthritis, etc. BUT that will NOT happen tomorrow. You can take the time, pick the right doctor, and get this done on your terms, when it won't mess you up for school, or applying to colleges, or whatever is your life priority right now.

I don't know what your financial or insurance situation is, but if you are not planning on going to college, your health insurance through your parents might be stopping when you turn 18. Also, Shriners offers free surgery for people 18 or under. If you schedule your first appointment with them by the time you're 18, they'll treat you through your 21st birthday, so if you or your family might need their help, think about scheduling at least an initial consultation with them soon.

Best of luck Emily!

Susanna

[ANIMAL LOVER12]

Hi Emily,
I am twelve years old. I have known about my scoliosis when I was six years old. My upper curve is 65 degrees and my lower 54 degrees. My doctor told me that after 50 degrees it is very likely that without surgery curves will progress into adulthood. I am having surgery done on my curves in April or May of next year. I decided that the surgery would do the best for me. I tried a brace but the curves were just too big. Get a feww opinions if you want. Just like Susanna said scoliosis surgery is normally not an emergent surgery. Take your time and you will find what is right for you. I wish you luck!

[Emily]

Thank you all for writing to me. This helps me a lot! Some of my friends i have told nd they said to go and do the surgery. Others are not sure. I just dont want to hate myself later in life if i did not do it or did.

Theres this lady that i work with and her daughter had it done and she said she was glad that she got it done. I asked her mom to ask her a lot of questions for me. So ill see what she says.

See like 2 years ago i was going to have the surgery but one doctor said i did not need it and i did not do the surgery because my degrees were in the 50's. He should me pictures of people with the scar and without the surgery and it scared me!

so thats why i dont know what to do about it. At school i been looking up things about the surgery and what will happen. Its very sad to read about it so i dont say much to people about it.

in my life right nw it feels like all the bad things are major and the good things just last for awhile. But i quess that is life right?

i just feel like writing sorry i know this is post to be about the surgery but my best friend is not my best friend anymore and i just want to share what i am thinking.

my best friend is going to have a baby i used to care about her but she seems lik she does not care at all and she is only 18 i have about 5 friends that i know are going to have a kid and 3 that all ready had a kid this year. Its verry sad!

One of other friends used me to drive her home from school and to work (cuz i work with her) but that is all another story.

But i am still thinking about the surgery and i just need to have a eace about everything. With God and with myself. Thanks for listening....

[lrmb]

Hi Emily,

It's difficult to take everything on board when the decisions seem so big and life-changing, and when other things like friendships sometimes aren't going as you would like. As some of the others said, remember that time is on your side, and you have time to think things through and talk to as many people as you need before deciding to go into surgery.

I just wanted to say that in my case, what really helped me make the decision whether or not to have surgery was going to see three different surgeons. It was very draining, but after two of them recommended me NOT to have surgery, I feel like I should trust them. (My situation is that my top curve was 40 degrees when I stopped growing. Now, at 29 years old, it's about 48. So it's definitely progressing, but very very slowly. They said that until it starts progressing much faster or causing pain they would wait until that happened, or it gets to about 55-60 degrees, or I get to my late 30s, before doing surgery.)

So, if possible, try and see a couple of surgeons, if only to put your mind at rest. If you see a few and they all tell you more or less the same thing, then it's easier to make the decision. For what it's worth, I know that it's much easier to recover and get on with your life having this surgery at a younger age. (For me one of the worse things is "waiting" and seeing what happens next!) I have read and heard so many stories of people who have gotten back to life very normally after surgery. Also, pregnancy is not usually affected by having the rods in the back, and fusion usually doesn't have a big impact on pregnancy and delivery.

All the best, and let us know what happens.
~Laura

[Emily]

Thank you for writing me i am goingto ask my mom if i can go to 2 other doctors. And see what they say. But i want to thank you all for writing me back. It means a lot to me that i have someone to talk to and write too. Thank you.

I have a question for anyone i heard that if you have scoliosis that you will past it on to your children. Is that true?
If i have a baby will the baby have scoliosis just like me? :confused: Because that would just be bad to think about. oh gees.

But a good news about things is that thanksgiving is coming here soon! My sister is coming down with her husband and they will find out about my back and they will pray for me (they always pray for me) Which i love because i love god. But its going to be nice to spend time with family.

What is everyone else doing for the holiday? :)

Emily

[Emily]

I saw one of my friends the other day at work which i have not seen in four years! She had the surgery about 6 months ago and she is walking around fine and everything. I asked her questions and she was like i never really thought about it. the doctor told me to do it and i did. So then i asked her to show me her scar and it just blew my mind that it was like oh gosh. How horrable a line down her back... Its just big about 1 inch or a little more. I am not saying its a bad thing but it makes me think about it a lot.

And when i think about me having the surgery its like i am going to have a line down my back for life. I am not sure what to do now about what i saw but all in all, i wish this Never happen to me or anyone!!!!

[lin515]

Emily,

I am the mother of an 11 year old girl who has a 43 degree curve she will almost certainly need surgery as she has many many years of growing left. I too wish this never happened to her or anyone else for that matter. You have to try to put things into perspective. There are children who are perfectly healthy and normal and may god bless them, then there are children who are fighting for their lives everyday and may god especially bless them. We are fortunate in that scoliosis is never life threatening. We are fortunate in that there is a surgery although not pleasant, but one that can make many people feel better emotionally and physically. I can understand your fears but first off scars fade in time 6 months is still very soon.There are creams that heal scars so they may be less noticable. If a curve continues to progress that wont be very pretty either. My daughters back is already extremely noticable. Gather all the knowledge you can, get as many opinions as you can, ask questions and relate your concerns to your surgeon. Whatever you decide It will be what is right for you.
Linda.

[susannajon]

Hi Emily,

Hi, remember, scars fade and are easily hidden. Don't let that be the deciding factor.

With that said, it is totally normal to feel scared. It IS a really big scar and very major surgery, and under no circumstances should you rush into this. The surgery is final. Once done you can not go back. Get as many opinions as your family can manage, but remember....

1) Thousands of people have this surgery every year and few have any serious complications.

2) If you have done your research, and picked a top notch doc, your chances of complications drop even more.

3) Each year you wait the curve gets worse, and could get more stiff, meaning there's more permanent damage and it's harder to correct.

4) Only you can decide what's best. Ultimately, it is your body and your choice.

We're here to listen, however you (with the support of your friends and your family) must make the decision that's right for you.

Susanna

[ANIMAL LOVER12]

Hi Emily,
Sadly,yes it is true that scoliosis passes on through families. My grandmother and my dad had it now I have it. It isn't always the case though. If you have a child it still might not have scoliosis. There is just a greater risk of them having it.

[celestin1170]

hey emily this is keri. im 12 years old and im having surgery in jan. my mom and the doctors told me that it will be a 4 hour surgery and that it wont be that bad... you have nothung to be scard off. well when you find out anything let the web site know...

best of wishes

KERI:D

[blairf83]

Hey Emily

60 isn't the worst curve in the world, but it's pretty significant.
A couple things to consider:

The older you are when you have surgery, the harder it is to come back from, and also there's a chance your curve could increase (mine did, and I wasn't diagnosed until I was 18 years old, had only about a 20 degree curve, had surgery at 20 years old for a 52 degree curve) even though you're through your growth.
Also, smaller curves generally get better corrections than big ones.

Yes, surgery is a big deal, and shouldn't be brushed off as a small thing. I was a total mess mentally before my surgery. Terrified that I would never be "me" or be "normal" again. But here I am a year later, I can run, I can ride, I can do everything I did before, and that's only with 4 bones in my back not fused together. It's really not so bad. And most people who have seen my scar either thought it was pretty cool, or just plain didn't care. And my incision became infected and is about an inch wide at the top and pretty deep.
Not nearly as tidy as the 3 other women and girls I know who've had it done. Their scars are all so thin and tidy that you wouldn't notice them walking down the street in a shirt that shows their back off...

[mamakay]

Blairf83,

You are the first person I've read that had an infection like the one my daughter seems to have now.
It is at the top of her incision and is VERY wide and DEEP.
It is about 3-4 inchs long also.
I am praying it will not continue down bc I know that will mean more trouble.
We have been babying it for 3-4 weeks and the progress is hard to notice. She is on antibiotics and we are going to see the Dr again tomorrow about it.
He says it will heal but that is all the explainning we get. I guess bc it is a waiting game at this point.
We are very sad at the delay of her recovery and of course frightned . Do you have any advice for us since I read here your scar seems like hers will look if the healing works.
Thank you , mamakay

[blairf83]

Oh good... I'm glad I'm not the only one to have that happen.

The good news is that at a year post op, it doesn't look so awful.

It took a good 2 months of nursing before it closed fully (hydrogen peroxide twice a day, pack the wound with antibiotic ointment, cover with gauze and tape it. Had to try not to get it wet (saran wrapped and taped) for about a month...

The scar is really thin- you can see the bone sticking out a little bit.
For a while, it was incredibly recessed- the skin around it felt really big and thick. But I think it's slowly filling in bit by bit since I can't feel as big a difference now between the two areas.

It has faded to a nice, mellow pink though.
I took some pics of my back several months ago... If you want to see, the url is http://community.webshots.com/user/blairasb and the pics are in the "Scoliosis" album.

The scar looks far better now. But when I see my surgeon, I'm going to talk to him about if having plastics work done on it might help... The skin is pretty loose over it, so maybe they might be able to close it up or something...

[susannajon]

Blairf83,

Thanks for sharing that picture. It makes me feel much better, because one of my biggest fears as a mom is an infection. Your scar really looks very good considering what you went through. I think in a couple of years you will barely notice it.

Have you tried Maderma? It's expensive and you need to apply it three times a day for several weeks, but many people say it works great.

Thanks again. It is very generous for you to share something as personal as this, and it really helps us all who are facing surgery for ourselves or our kids.

Susanna

[tikkasmom]

Hi Emily,

First I would like to say that I'm sorry your faced with the prospect of surgery and it is understandable that you are worried about it. You've gotten some very good advice from the replies here, and I hope that they help.

Try not to worry about the scar. Scars are like a badge of honor. It shows you went through a trial and survived. Anyone who would think less of you because of a scar is not worth having around.

I know that many people have had successful pregnacies after back surgery . Ask your doctor about any problems and how to overcome them. But, please don't be in such a hurry to be a mom. Your very young (so are your friends), and probably should make sure your life is settled before taking on this very big responsibility.

Good luck.
Tikka's Mom

[blairf83]

Susanna- no problem at all... So many people helped me out before and after my surgery with their personal stories, information, and support. It has been a real lifesaver and helped me to feel so much better about the whole experience.. I figure I can't really ever pay those people back who have helped me so much, but I can help those who have yet to go through it.

I've tried other scar treatments without any real results (other than keeping the scar soft and keeping it from getting sun burned). I've thought of trying Mederma, but knowing how bad I was about applying the other stuff ;), I'm not sure it would really be worth the financial outlay...

[Emily]

Thanks you all for bening here and helping me thou this. i would like to live a normal life. But sometimes i dont. sometimes i am in pain because of my back and other times it does not hurt at all.
And that makes me upset because people have to go through with this. And have to fight for life everyday to live.

Its very sad. I just worry about the scar because i dont want people to be like Oh My! i dont want a scar so big that i cant go to the beach without everyone looking at it.

I dont want it to show one day when i have my wedding. I dont want to have problems later in life. Why does this happen?

I just want to pick up my nease and newphew with no problem i want to play with them and not hurt. I just want to be a normal girl. Thanks for listening.

[Froggybee19]

Hey Em, I am 17 too! I totally understand what you are going through! I was born with congenital scoliosis. Senior year is tough, because how can you have surgery when college is around the corner! Honestly though, I say go for it, it can only help. So far, I have had six spinal surgeries. I have had severe complications, but that is just me, it won't happen to you! I had to stap back a year, I am doing junior year again because last year I had four spinals and vascular, so I missed the whole year. If you are worried about college, you can deffer a semester for medical and start in the winter! It will all work out! About the scar thing, it goes (for me) from mid neck to into my butt crack (sorry, but I can't think of another way of putting it). I usually cover it up, but that is because I want to. I also have other surgery scars like the ant. one and others. My mom calls me a quilt! Surgery is fine, just don't worry too much! Good Luck!:D

[Laken]

Hey Emily,
You need to stay postive, and have faith that everthing will turn out all right. I have had two surgery's and I don't regret goin through with them. It can be so confusing before your surgery. I personally didn't want to talk about it until the week before my surgery. The reality of the surgery didn't hit me really until the night before my surgery. I am not going to lie to you it isn't the best thing in your life, but it is a life changing one. I mean I really learnt who my friend's were. I would listen to my docor's, and don't be afarid to get a second opinion. I got on the internet, and looked up a doctor i could get my second opinion from.

[Emily]

Hey everyone

Everything is ok well for the past week or so i been having sharp back pain on my left shoulder side. I mean its like nobody can touch me. And it feels like a buries? BUt i dont know whats going on? is it my back moving? or is it my nerves? And i have been getting a lot og headacks too. Is this because of my back?


Emily

Curves are 60

[ANIMAL LOVER12]

Hi Emily,
I get back pain too. I don't know what it is from though. I also used to get frequent headaches. I don't get them as often now though. I will keep you inmy prayers that your back is feeling beter!

[matt]

Hi Emily. My name is Ross. I am a 15 year old from Louisiana. I had the Scoliosis surgery about 3 months ago. I had the surgery because my scoliosis and Scheuermann's Disease were getting pretty bad to the point that my lungs and heart were being compressed. I was starting to have troubling breathing. Anything that I would do, I lost my breath pretty quickly and it took a long time for me to be able to breath normally again. Now after surgery, I really have no problems breathing. Now consider this. You have the surgery now, and you have very few restrictions for the rest of your life. Without the surgery, you have no restrictions until about 40, were like you said, you start to have breathing problems. If you do not do the surgery, you may not be able to do things with your children and grandchildren. You may want to consider that. I hope that this information helps you! If you consider surgery, or whatever choice that you make, please let us know! My email addy is hard_roc_child08@hotmail.com I used to get alot of headaches too. They were getting to the point that I had to see a neurologist and had to have a CT Scan done. They thought that they were looking for a tumor or anurysm or something. Then I was diagnosed with the Scoliosis. Thats when it all made sense.

Hope that this helps you some!
Good Luck!
Ross

[Emily]

Hi i have not wrote in a long time but its been hard for me to make the right choice of having to deal with my back. I am still not sure if i still want to do surgery or not but i am still thinking about it. I have about 5 months to make my final answer. My boyfriend told me he is with me intill the end and that means a lot to me. My mom says that she wants what it best and that its up to me.
Which i dont want it to be up to me. I have been having really strong back pain so my mom went to my doctor and he gave me pain pills so that helps a lot! Which i am glad.

My birthday is coming up and ill be 18 and i wonder whats going to happen with everything. but oh well. Life is short and i should make it lasted. I dont know how some young people can make the choice of having the surgery. Me its hard (i know its hard for everyone) cuz what if it does not work, or the ugly scar??? will i be comfortable in my body??? All answers that i have been thinking about.

Thanks again for your advice and hope and prays.

both curves are 60

[matt]

Hi Emily. I'm sorry that you feel like you do. Having all these different feelings going through your head. I know it is hard. It was hard for me too. But, don't look at the negatives. Don't think of the scar as ugly, but as a goal completed. A goal that will benefit you much through life. I'm glad to hear that your boyfriend is sticking by you. I have a friend in Chicago who, not only her boyfriend, but her friends stop talking to her when she went into surgery. I'm going to tell you what I told her. If they can't stick around for a few bumps in the road, then why should you? Let them go. But, I am so happy that you don't have to worry about that! Well, I hope to hear from you and I will support your decision, which ever you make!! Best Wishes!!! Ross

[had2maby3]

hey emily advise goahead a do the surgery im 13 right now but i had the surgery done in the 6th grade my spin was 77 degreese on top and 52 on the bottom it was really scary but i did fine ~*kayley 13*~

[swilkers]

Emily.... I am 38 diagnosed at ohhh around 3rd grad wore braces until 6th grad when at age 12 I had surgery... I highly recommend it... I had the best doctors and parents who listened - thank goodness because I would have opted out! I have had no problems... zero and I too would have faced serious problems in later life... Emily - this is something you can do for yourself and you should - this is a fixable issue ... it's not cancer or something that can not be "fixed" Do this for yourself and your loved ones :) Best of Luck and feel free to contact me...

[Emily]

Ross, kayley,swilkers, and everyone else!!!:


Thank you for standing by me. It feels really good that i have people i can talk to about this. i was just wondering why cant i get it thought my head that i should do it?

Or like I should say yes or no about the surgery? When i found out that i had Scoliosis i said no of having the surgery. But then i had a dream of having it done and it was really weird. I was just laying there and everyone was looking at me around the bed and i felt fine but it was like all slow motion to me then i woke up. But i thought that was a sign that i should do it. So i really dont know what to think about it.
I wish i knew. Like i know i should at least do the surgery because when i get older its going to be hard, wont be able to breathe, in pain most of the time, etc...

If i do the surgery then i cant do many of things for awhile and then i am scared in later in life that if i want to have kids that they will have it or have problems in that area.
Or like my scar is really bad.
Or if i need another surgery later in life.
All these things are in my head and i know i kinda keep talking about the same thing but i just want to know. you know.

And then if i do the surgery i have to put things on hold like going to college and going to work etc...

Or maybe i wont feel comfortable in my own body, like not wanting to go to the beach? I dont want to make a big deal about this but this is the first time for having anything done to me that is big. Thank you all for being here and there for me i am still wondering what i should do i am kinda thinking about doing it....


Emily

both curves are 60

[swilkers]

Emily, my scare is the length of my back and i am 5 7 so it's long! but... honestly it's soooo thin no one even knows .... why risk problems later in life - life threatening things... you need to do this for yoursel! Down time from the surger is very minimal now - just a matter of months!!! I always worried my kids would be at risk and sure enough... my daughter just diagnosed which has prompted me to look her and other forums for support - it's my absolute worst nightmare come true that she has to go thru this bracing and probably surgery - but at the end of the day... it sucks for her but I know - for sure she is going to be ok.. just like me....

[had2maby3]

emily the scars mabey a little annoying and yeah you will have to give things up for a little wile but i had the worst of scars when i whent to the beach for the first time after my surgery nothing wasnt normal exept people had asked what happened and all i said was that i had spinal surgery and they didnt say anything nobody looked at me funny or anything
kayley77 and55 degree curve

[Emily]

I think i am going to go ahead and do the surgery. I am just really really scared about doing it. Its just like i cant stop thinking about it and i am not sure if it is the right choice or not. But i just want to live a normal life. I want to know if you have the surgery do you lose weight? is it a lot? Do you go to rehab? after the surgery? Show i start working out my body? ......



Emily

[cub2007]

hey i had surgery two yrs. ago and before it, they said i had to see a pulmonologist for my lungs. i had a 57 degree curve and they said my lung capacity was only 47%, which is pretty bad. it was becaus eof the scoliosis. just recently, i was found to have a heart murmur. when they did the ultra sound, the person said that they had a hard time finding the valves of my heart. they siad the scoliosis probably moved it around a little.

this just proves what scoliois can do to your body. please don't hesitate to get surgery. i'm am so happy that i had it done and your body will suffer if you don't do something about it!

good luck and God Bless