Hi! I'm new

[AsNicoleDayzed]

Hi everyone! I decided today to join this forum to maybe help me better understand my condition. I first found out that I had scoliosis when I was 11 or 12 years old, I can't really remember. I am 15 years old now and it has been such a rollercoster for me. It was first discovered by a routine checkup by my family doctor when I was in the 7th grade. My orthopedic doctor started me out with a brace since I was young and not fully developed yet. I actually got my brace on Sept. 11, 2001. Pretty ironic huh? At the beginning I had a 40 upper and around 40 lower curviture. With the back brace and physical therapy it went down to the 20's. I thought god had answered my prayers. But then it started to worsen and I am now 45 degrees on the top and around 40 degrees on the bottom. From being so close to surgery to feeling normal again to once again dealing with it is so depressing to me. I know there are so many stories that are worse than mine, but to me it is like the world coming to an end. My doctor says I don't need surgery yet, but in my heart I know that I am going to need it. Because my curves have somewhat balanced each other out, it doesn't seem that noticeable, but to me it's all I ever see. Since my spine has moved the muscles on one side of my back, it shows somewhat of a hump. Since the curve pushes my ribs and my muscles, it leaves this stiffness and really hurts sometimes. I am so scared to get surgery and I would do anything not to have it.
But I have some questions.
Will I be less flexible than if I didn't have the sugery? My scoliosis has hindered some of my flexibility but will is drastically change with sugery?
How does your life change after surgery...is it really changed forever?
Are you regretting ever having the surgery?
How long are you in bed before you can really move?
How much and for how long does it hurt?
Any stories would really help me a lot.
Thank you so much.

[Alexandra Jones]

Hi, I am Alexandra

It has been 9 months since I've had the surgery.
to answer your questions. flexibilty depends on how far down they fuse your spine I probably won't have the same flexibility as I used to mind you my largest curve was at 90 degrees by the time I had surgery (rapid onset). right after surgery you might feel stiff really stiff but depends on how far they have to cut you open. My life has changed a lot after surgery first off I didn't go back to school til a month and a half after surgery. My doctor is conservative, but I couldn't carry my books to school if it weighed more than ten pounds for the rest of the year. I am just able to do stuff that I used to again like jogging and sports etc. still have limits though. Surgery has defintily changed my life right now I think of It as a big pain in the Butt. however I know that one day I will be thankful I got it (really really thankful) and accept it's part of who I am. you are not really in bed for that long really well i wasn't any ways the second day after my surgery I was sitting at the edge of my bed and standing. the third day I was walking a little bit. they hook you up to morfin or some sort of pain killer were you have to press the button that stuff I found didn't really work sometimes you will fell it especailly if the pain medication has stopped running into your body I found it woke me up sometimes if I wasn't in a deep enough sleep. after you leave the hospital they might give you some prescription pain medication I know they gave me some and it really worked well it made it easier for me to sleep and stuff but when it wore out you got back to the reallity of pain espeacially if you where a sleep you woke most likely. It hurts for the first little will but then you get used to it.

Before surgery I was really really freaked out espeacially when I found out what day my surgery was. And when I got back to school people were asking me what was the most scarriest part of the operation and that was when I realized it was mind over matter because their was no reason to be scared well in my case anyway because everything went smoothly there was really nothing to it. the most annoying part since then was people being over cautios like I could break any second espeacially my mom that is really annoying and my mom as ligthened up a some but is cuatios however i think she will freak the first time I play field hockey again. after surgery I found was no picnic because not only did I have to catch up but I didn't like feeling useless.
P.S.
sorry for spelling errors. I hope I have helped you some.
Alexandra

[ANIMAL LOVER12]

I had surgery on April 26, 2005. I'll try to answer your questions:

Will I be less flexible than if I didn't have the sugery? My scoliosis has hindered some of my flexibility but will is drastically change with sugery?

I was fused from T3-L4 so most of the part of my spine that bends is fused. I can still bend over at the waist, but I can't go as far as I used to be able to. I think it really depends on how low down in the lumbar area it's fused.


How does your life change after surgery...is it really changed forever?

You have restriction after surgery, but those aren't going to be around forever. I know that surgery has made me a stronger person and that's going to be forever.

Are you regretting ever having the surgery?

Definately not. I'm really really glad I had it. My freinds always ask if I regret having it, and my answer is always no.

How long are you in bed before you can really move?

The second day after surgery I was sitting at the side of the bed and walked over to a chair. It hurts to walk at first, so you gradually increase how much you walk.

How much and for how long does it hurt?

When I first woke up from surgery, it was a 6 out of 10 on the pain scale. They gave me my PCA pump (a little button you press when you need pain medication) and it went down to a 4. I think it stayed at a 4 for almost the whole week after surgery (I was in the hospital a week) and on the last 2 days it was a 3. My pain decreased a lot and I had no pain around 4 weeks post-op. I just got slight soreness. I'm almost 4 months post-op now, and I haven't had any pain for at least 2.5 months now.

[Analyzing Anne]

Just be careful with what happens because, I'm 15 too, and my surgery went wrong. Make sure that they are analyzing you with electronic monitors, b/c thatl's how they found my prob. I wa scheduled to have the surgery July 14, 2005 and during the surgery, before they started instrumentation but after they cut me open, I lost all motor control in my legs. My left is fine now but my right is still really weak. I had to use a walker and a cane, but now I can walk on my own but w/ a limp and I have to do physical therepy twice a week. Just becareful. They think that b/c of my curves (mid-high 40's each) that a blood vessel was kinked and when my bp dropped, I lost my oxygen supply in the region of L5. So, just becareful. I would talk to your surgeon before you have the surgery about how they will monitor you and what could happen after the surgery. But you should be fine, most people are. I don't have the rods and I have to do it again. So.... if it helps, I know what you're doing again. I had a brace but it didn't work.

Take care and good luck!
Sarah

[cac337]

Hey,
Your scoliosis story reminds me very much of my own. I too was diagnosed in 7th grade during a routine physical, and I had two curves which were over 45 degrees. I didn't, however, have to go through wearing a brace. My only option was to have surgery, which I think that in hindsight was the best route to take instead of having the brace first, then surgery. For me, it wasn't one, but TWO surgeries that were needed for me to be totally corrected. To be honest, if I had to go through it all again, I most certainly would, because the outcome of the surgeries is what I think is priceless.

For me, my flexibility hasn't really changed much at all since my surgeries. The first few weeks after surgery don't really allow for much flexibility, since the only goal is to just let everything heal and start to solidify. The first 6 months after surgery are crucial because that is when all the fusion is taking place. These days, I don't have that many flexibility problems (mainly because my lumbar spine wasn't fused), but because I have rods throughout my whole thoracic (middle-section) area, it's really hard for me to turn around when I'm driving in reverse (such a pain trying to explain that to my parents!! but I've realized that abdominal/core strength can really fix that issue!). I certainly can't arch my back, but do I have to do that in order to live life? Nah.

After both of my surgeries, I was in bed for a full month. I wasn't specifically lying in bed 24/7. I would be able to get out of bed and walk around the house, go for a short walk in the backyard, as well as alternate my time resting between my bed & a reclining chair. It's not like being glued to a bed for a month or anything like that. In fact, the DAY after my surgery, I was sitting up, and a day later I was standing up and walking a bit. These days people are up and out of bed as soon as possible after their surgeries. It’s a good thing.

My surgeries have definitely changed my life for the better. One time I was being interviewed, and this guy asked me what it was like to “have my life on hold for a year” because I was recovering from my second surgery. I got really ticked and told him that my life WASN’T put on hold – if anything my life moved through a good chunk of chapters in the story of my life. I’ve aged a lot faster and become more wiser than most people my age. At the end of this month, I’ll be turning 20, but honestly, I’ve felt like I was 20-something for the past few years. Going through something like spinal fusion surgery can force you to mature a bit faster. It just exposes you to reality and can hopefully allow you to have a better appreciation for life and how you live each day. It’s all a matter of your interpretation and how you want to grow from the experience. You can either be a bitter person, or a better person, but the choice is yours. For me, I’m a lot stronger, and I’m more open-minded to people that I meet. It’s certainly made me appreciate seeing people who are in far worse conditions than anything I’ve ever had, and it makes me empathize with them. I’m thankful for that. My surgeries remind me to not be selfish and to take a moment to try to help someone else, because if people didn't help me, then I wouldn't be where I am right now.

Just remember that you’re not alone with what you have to face, and that no matter what, there’s always someone else out there that can understand what you’re going through!

Take care!

cait

[flowerpower]

Cait,

What an extraordinary "young" person you are! What you said in the last paragraph takes some people a lifetime to learn, if at all. You have a great attitude & a wonderful message for all -

Regards,

Renee

[AsNicoleDayzed]

Thank you

Thank you so much for all the advise and the information all of you have given me. Cac337, I especially want to thank you because it helped so much you can't even imagine. I guess the thing that scares me the most is that I will be limited to certain things. I hate feeling limited, but if I do in fact end up having sugery, I am glad some good will come from it, other than my back...heh. As lame as it does sound, it does make me feel better knowing that I am not the only one, especially hearing that people can still lead normal lives and grow from the experience. I still don't want to have the surgery, but atleast I know it isn't as bad as it seems.
Not being able to arch your back, Cac337? What do you mean by that?

[cac337]

Hi AsNicoleDayzed,
When I referred to "arching" your back, I was referencing the ability to curve your spine upwards, as if you were trying to move the way a cat does when they stretch. Get what I'm saying? It's pretty much impossible to do that after spinal fusion because it requires the vertebrae to rotate and stuff. After the rods and stuff get fused to the vertebrae, they really can't move much. The reason why most people have good flexibility after surgery these days is because their entire spine isn't fused, which is a pretty cool thing.

I'm glad my other post helped you!

Take care,
-C

[matt]

Hi Nicole

Hi. My name is Ross. I'm 15 and from SW Louisiana. When I was 14, I found out that I had Scoliosis (21*, nothing serious) and Scheuermann's Kyphosis Disease (57* {Normal 45*}). I was just like you. All I would see when I looked in the mirror was my uneven shoulders, my hump, just all the appearences of Scoliosis. I didn't like it. About 3 months after being diagnosed, I was sent to Shriners Hospital for Children-Shreveport. Thats when I found out that my Scoliosis was then 36* and my Kyphosis was 77*. Not good news. The surgeon told me that surgery was my only option. I was devestated. I was just sooooo depressed. I just didn't know what to do. I would cry b/c I knew that I would never be the same after surgery. So, surgery came and went. Lots of pain and hurting (but nothing unbearable and nothing a little Morephine and Demerol wouldn't help .) So, here I am, almost a year past, and doing wonderful. I'm going to school. I'm taking some pre-nursing courses at a local university. I'm working 3-4 days a week at a local pediatric hospital (going to school to become a nurse after high school, hoping to go into pediatrics.) I work in a Pedi Emergency Room. So, you can tell that I'm doing good. Everything will turn out great. After surgery, I had practically no flexibility. Now, the only bad thing is that my spine doesn't move because of the fusion. But you learn to pass those obstacles. Like, when I bend, I bend from the waist, or with my knees. You'll get there one way or another. LOL. I have no regret of having surgery. Has my surgery changed my life?? OH YEA!!! In a wonderful way. I'm the kind of person, who likes to see things on the good side. Like, I look at having my surgery, made me the patient. So, when I become a nurse, I will know how to be a good nurse, because at one time, I was the patient. If I didn't have the surgery, I would not have met all these wonderful people on this site. If I didn't have the surgery, I wouldn't have my college being completely paid for. You have to look at things in positive attitudes. I think of my surgery as being a blessing. Do you catch my drift? If you would ever like to talk, my email address is hard_roc_child08@hotmail.com. I also have MSN Messenger, and my Yahoo SN is rock_child08. I hope to hear from you soon. Take care and God Bless! Ross

[Bouncy_Buffy]

Hi There!
i'm new on this today

My Curves sound fairly similar to yours and yet i've been put down to go for surgery. Unfortunatly in England, The waiting list is 1 year, (done on the NHS), so i was just wondering WHY you havent been put on the list for surgery yet!

i haven't had a brace, i was just put straight down on there. (i'm 16) although i still got 1 year of growing left (so he says) it corresponds with the surgery.

!