hey im new and i have a few questions about my scoliosis situation.. please help!

[justbeachy615]

hi everyone this is my first post!.. my names whitney im 16 and i was officially diagnosed with "moderate" scoliosis (the curve is a 38 right thoratic) almost 3 months ago. My ribcage on the left side sticks out severely and i hate it.
my left shoulder is obviously lower and my right shoulder blade sticks out way more than the left one. i am so self concious because of all of this. i have a doctor appt. in october and im going to find out if i need surgery, so i have a few questions for anyone in the same situation or that has any information
- compared to you, is a 38 curve worse or better than yours?
- did your ribs/chest bone stick out unaturally?
- if you had surgery, how bad was the pain and was it worth it?
- what was your curve when you had surgery?
- did your back improve from the outside (did the hump go away?)
- did you get any taller?
- how long was it before you went back to school if youre in school
- did your rib protrustion get better (if you had one)
- can you do all the things you used to be able to? (did the surgery limit your flexibility or anything?)
- WAS THE SURGERY WORTH IT

i know its a lot... but im terrified and i would reallllllly appreciate it if you could respond to these questions and/or give any other info or experiences you have wiht scoliosis.

thanks SO much!
whit in NC

[Alison]

G'day

For most of your questions, I'm probably not the best person to reply because my scoli situation is a little bit different to most, but I can help with a couple of questions.

:compared to you, is a 38 curve worse or better than yours?: try and not get too focused on the numbers (even though I know its hard), cause there is a +5/-5 margin degree of error when they are measuring (even between the same people). But 38 degrees isn't in the "ballpark" they normally use for whether surgery or not. This isn't usually until the 45/50 degree mark. When you go and see the Doc, one of the things he will look at is how much growth you have left (being 16 your probably pretty much fully grown, to do with periods and stuff) and how likely the curve is going to progress over the years. He may do some monitoring of your curve to see how it may/if progress.

:Time out of school: I was out of school for two months. I was ready to go back to school after about 6 weeks, but I had surgery just before the school holidays (which are 6 weeks in the summer) and so I went back for the start of the school year). It really depends from person to person.

:My breasts are almost a cup size difference. But thats better than before surgery, where it was a bit more than this, and nothing strappy fitted because I had demented shoulder blades (one stuck out lots and lots) its nowhere perfect (anything strappy is different lengths on each side to fit properly) but heaps better than before.

: I still have a few restrictions post surgery. Most of them are the high impact/"bashing" sports cateogary. Being a thorasic (T2-T11) fusion I have pretty much "normalish" flexibility. I can touch my toes, but i can't bend backwards. The only thing that is difficult is doing stuff where I am bent up lots.

: You did ask this one, my curves were high sixties, low sixties (I can't remember what the exact degrees were I think 68 and 61) and were a couple of degrees less after surgery. That's why I'm not the best to answer most of the questions cause I had a "holding fusion" only..

My best advice, try and relax. Even though it may seem extremely difficult to. When you go and see the doc he will take time to explain things, and you won't find yourself extremely confused and things moving too fast for you to get a "Grip" on.

Best Wishes

Alison

[mamakay]

Hi Whitney,
I am a mom but will answer a few of the questions that may resemble my daughters situation.
She was diagnosed in June w/a 48-52 degree curve.
Surgery is Nov 3.
She will be 16 in 3wks.
And driving!!!!!!!!!!!!!! are you???
She is having back pain the last few months and takes motrin for it.
She loves to wake skate at the lake, I think she will be able to return to this in a certain amount of time. These activities depend on your Dr. they have different timelines.
One to two inches taller are expected after the correction.
Your curve is not considered in the operating range from what I understand Dr's consider, so that's good news for you. It is important to monitior it regularly and the mri is painless and routine.
My daughter has a terrible protrusion but is funny that hardly any of her friends have noticed it unless they are changing clothes.
She has one breast that is a size different bc of the spine twisting. I think this is suppose to get better but the protrusion will never be completly even.
You will not grow where they do the fusion but maybe you are already close to being done growing.
Just get more than one opinion before you decide on surgery, you are really far from considering this but I think you are a very mature person for investigating and caring about yourself, good luck and write again.
Also I think there is a spinekids.com site that may have some experiences for you.
Read mumof5 threads here, she has a daughter who went thru this and documents it all well.
mamakay

[jc3]

hey i'm new and i have a few questions

Hi Whitney
you came to the right place if you have questions. Everyone here is so helpful. Like everyone else said at 38 degrees surgery will usually not be considered. My daughter is having surgery on Nov. 3rd and we waited until her curve hit 50. About your rib hump, my daughter also has that. She doesn't seem to mind that she has it, but i'm sure it would bother her later on. I believe from the surgery itself that does not get corrected. She is having something performed called a thoroscapy ( i may not be spelling that correctly), which they remove some of the ribs used for the bone graft, which they do grow back and that makes the rib hump go down considerably.
Good luck.
Jennifer

[mumof5]

Hi Whitney,
It is weird reading through new posts and seeing my name pop up.
I would just like to say on the breast size issue that EVERYONE has slightly different sized breasts. I was actually reading something the other day about back pain being caused by incorrect bras and how you should be properly fitted. In the article they say that you should always fit to the largest breast. I know someone who has no back problems and is an A cup on one side and a C on the other. That extreme is not common but is still normal.
In my daughters case her upper torso looked as if she was just twisting herself around. This does affect the appearance of both breast regardless of size. I wont say anything else her on that about my daughter as I value her friendship but if you want to talk about it more send me a private message.
If it is a concern for you they best way to 'cover' it is by your clothing choice.
There are a few actress and models who have scoliosis. There is an Australian actress who had a 38* curve and wore a brace for it. I don't know how much of her stuff is on T.V. worldwide, she stars in a 'soapie' her called All Saints. Her name is Georgie Parker. I have looked very closely at some recent photographs of her and she poses to hide it, very well. But what I was going to say is check out some internet sites there are a couple that list 'stars' who have scoliosis, look at how they dress, what type of clothes they wear. But above all be proud of who you are, stand tall even if the middle is wonky. Chances are if you forget about being bent not many others will notice.
Best wishes.
Cheryl.

[lrmb]

Hi Whitney! Welcome to the forum. Just to add to the other posts, I know how it feels to hate your ribs, my curve has gotten worse in the past few years and I hate how one side sticks out in front and the other from behind. BUT, everybody always tells me they could never notice unless they looked really hard, and even my boyfriend says he never ever notices the shape.

I'm pretty sure unless there is an extra consideration in your case that most surgeons wouldn't recommend the surgery at your degree. I'm 28, and my upper curve measures around 46 degrees, and the surgeons are still debating whether it "needs" surgery. If there are no other problems with breathing etc., and it's not certain it will get worse, not many people would (or should) be willing to do such a bit surgery.

Having said that, perhaps there are some things you could try to make yourself feel a bit better about it, or to help your posture. (I know my curve looks much worse when I'm slumping.) I've heard people say really good things about yoga for muscle strength and posture. It's excellent for general health also. As well, there is a new treatment undergoing trials from the FDA, a type of physical therapy called Pneumex. I'm not sure if you would be a good candidate, or if there is a provider near to where you live, but you might look it up and see what you and your guardians think. The provider I saw (who ended up being too far away to commute twice a week) said that in his experience it helps decrease rotation, which is the thing that in most cases makes scoliosis visually distressing.

Good luck with everything, and keep in touch with the site! ~Laura

[gemmajade]

- compared to you, is a 38 curve worse or better than yours? My curve before surgery was around 40degrees.
- did your ribs/chest bone stick out unaturally? My rib cage stuck out to the side, my waist wasnt alligned. One hip was more out than the other.
- if you had surgery, how bad was the pain and was it worth it? Before my operation i used to get back aches if i had done a lot like been walking all day..etc. In hospital i was wired to an epidural so i didnt feel any pain for about a week. When my epidural was removed i had about a day or two of pain until the nurses and my body agreed to the strong painkillers (dihycodine) that was given to me. I took the pain killers for about a month after my operation. I know get slight back ache if i do to much but nothing to be worried about.
- what was your curve when you had surgery? My curve was around 40degrees.
- did any of you girls have unexplicably small breasts due to scoliosis, and experience growth after surgery? I wouldnt say breast size had anything to do with scoliosis, but from being in hospital i did relise how skinny all of us girls where!
- did your back improve from the outside? Yes, my body now looks more alligned and "normal" i dont feel as self consious wearing a bikini. Clothes also fit me better.
- did you get any taller? Yes, i am 5'3 now and i was only 5'1.
- how long was it before you went back to school if youre in school? I had my operation at the biggening of the 6 week holidays, so i had about 4 weeks rest at home and started school at the same time as everyone else. I just take it easy in school and dont go up and down to many stairs.
- did your rib protrustion get better (if you had one) Yes
- can you do all the things you used to be able to? (did the surgery limit your flexibility or anything?) Its been about 6 weeks since my operation and ive only just started to feel back to my normal self. Im still tierd though, so i dont push my self to much. I like to take regular breaks sitting down..etc. I cant do any sports for a year, cant wait till i can dance again though! I also only have to wear my spinal brace/corset for another 6 weeks :-)
- WAS THE SURGERY WORTH IT. Defintly, i even fell proud of the scars!

[matt]

Hey Whitney. My curve before surgery was about 39* Right now I am 19 days post op. My chest bone when laying down was really out of whack. The pain after surgery was really bad,but I learned that if I pushed my PCA button every 6 minutes, it wasn't has bad.
From the outside, everybody still look at me and say how that they can't believe how straight I am. When I went into the hospital at 5'9'' and came out at 6'2''. The doc says that I can go back to school after 6-10 weeks. Except from the Scoliosis, I also Scheuermann's Kyphosis Disease. When I had the surgery, my hump went away. My sister compares my back to a wall b/c it is so flat now. I can't tell you if my rib hump got any better because I'm not able to bend over yet. Was the surgery worth it? I can't tell you yet. I hope all this helps you and good luck. Ross

[Horselover]

Answer to some questions

hi whitney?
Sorry couldn't quite remember the name. I was 12 when I had my first surgery. I had a 96 degree curve in my upper back. My shoulders were lopsided and they stuck out. My ribs stuck out badly too. I had pain after awhile. And if I had not had the surgery I would have died with in a couple years. I lost 15% or my right lung. And I shrunk 6 inches. I had a 7 hr surgery and I had my upper spine fused and I had a rod on either side of my spine. Then about 6 months after surgery I had to get the tops of my rods cut off because they popped off my spine. Then after that one of my rods popped off all together and they had to take it out. Now on November 29,2004 I will go and get the second rod out. And yes I would say the surgery is worth it. I grew 4 inches back my first surgery. Though I am still 4' 9" It sucks. I am short. And my breast size increased a bit. I am bigger there than my mother though I am still small. I was told I couldn't ride horses for a year after my first surgery. I didn't but it was hard. And I was told that I wouldn't be able to do somersaults. But I tried a couple years ago and I can still do them. But as for surgery it is worth it and don't worry. I can't say much about the pain. I have a high pain tolerancy and didn't need much pain killer. But it took me 2 months to recover enough that i could go to school without sleeping all day. I went to a private Christian school and so I was on the floor in the classroom and had lots of priveleges. I could eat whenever and sleep and yeah it was kinda fun except I felt very stiff. But My shoulders look better now. My torso is still short and it looks bad but yeah the hump did not go away completely. And I get called names like hunch back and all sorts of cruel names. But Yeah I can do things that normal people can do. And as for your back. I think a brace will be able to fix it. If not don't worry about the surgery. If you have any other questions/comments email me at kimberley_gayle1@hotmail.com(there is an underscore there) PS i am driving. I am 16 and it is fun. Just drive safe. Where I come from in Canada we get lots of snow lol