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PLEASE HELP _ Those who underwent spinal fusion for scoliosis please give me your opinion

Amera535AAmera535 Posts: 2
edited 08/14/2015 - 3:35 PM in Scoliosis
Hi everyone,
I need your advise on my situation. I have S-curve scoliosis. I am 25 years old. I discovered that I have idiopathic scoliosis 5 years ago only. My upper curve was 41+- 5 and the lower was 49+-5.
When I first discovered that I have scoliosis it was because of extreme back pain that I had to go to the ER. Then I went to a specialist who told me to just live with my scoliosis because I was 20 years old at the time, so my curves most likely would not progress (or would only progress 1 degree a year). Now, I'm 25 years old and seeing a new specialist who compared my old x-rays to the new ones this year, he told me that somewhere in my future I will have to get the surgery. However, now I have to weight the benefits of getting the surgery now than later in 5 years or 10. The doctor told me my fusion would be from T3-L4 or L5 . The doctor told me that my situation now is not an emergency, yet I am a candidate to get the surgery and now I'm healthier than ever.

Here is how I look at it:
Currently, I'm done with college and I'm applying to get my master's for next year, I have no job commitments and I will have a few months to recover. Secondly, I have my parents to take care of me during my recovery. I have no personal commitments, no kids, husband, etc. Also, as the doctor said generally now I'm healthier than I will be in 5 or 10 years. Another important aspect I'm looking at is my surgery and all hospital expenses will be paid for me. My back pain is manageable with ibuprofen.

In 5 or 10 years, I don't know how my life would be whether I would have job commitments or kids, etc. Also, I'm afraid that my back all of a sudden gets worse and I don't have the money to get the surgery done at that time.

I'm not scared of the surgery itself, but I'm scared from my life after the surgery. For example, would I be able to do the things we all take for granted, such as tying my shoes, bending to get a pen on the ground, applying nail polish on my toes, wearing high heels, stretching, etc.
I know that I will lose flexibility, however I'm worried that I am underestimating the amount of flexibility I would be losing, especially that my fusion is very long. I'm not a very flexible person, however I always have the urge to stretch my back I am afraid that with the spinal fusion I will have that urge but I won't be able to stretch ( the idea of this terrifies me). Please let me know if after your spinal fusion you had such problem.

How did your life change after spinal fusion? I want to know about the little things we do and never think about, like picking something up or swimming or just twisting our back to look at someone next to us,etc.

I have a lot of worries in my mind about this surgery and whether to get it done now , so PLEASE LET ME KNOW! After reading this do you think that getting the surgery now in oppose to later in 5 years is a good choice, I want to know from someone that underwent spinal fusion and know the other side of the story

Thank you



  • oughostooughost Posts: 1
    edited 08/17/2015 - 1:02 PM
    Hi Dennis,

    My situation is a little different from yours however as someone that has had a spinal fusion and titanium brace I can share my thoughts and experiences with you.


    I was diagnosed with idiopathic scoliosis at the age of 15 (I'm now 30). My S curve was approximately 60 degrees and progressing quite rapidly due to being in my teen growth spurt. Thus, surgery was necessity. After many consultations, the decision was to fuse my spine and attach a titanium brace to it.


    My operation lasted 8 hours and was successful - they'd reduced my curve to approximately 30 degrees and successfully fused and braced my spine. I also had to have some of my rib cage and shoulder blade removed for better access to my spine and for cosmetic reasons.

    Post op:

    I was in hospital for 2-3 weeks and in terrible pain, unable to walk or move. I had to have regular physiotherapy sessions to learn how to walk again. It was one of the most painful experiences in my life. Also, after leaving hospital, I had to wear a cast for 6 months and "be careful" around other people incase I was accidentally knocked. I was so fragile.

    1 year later:

    I was fully recovered from my operation and I could walk freely (and even run) again. I no longer had the back pains I used to have, however my curve was still 'visible' even when clothed. I had expected (and hoped) this to no longer be visible after the op.

    4 years later:

    I noticed that my spine continued to curve and an x-ray confirmed this. I had to have a second operation. My brace was adjusted and parts of my shoulder blade and rib cage were removed as they started to rub against each other and protrude outwards from my back. Note: the operation was only a minor one (~ 1 hour) and I was only in hospital for a few days.

    Now (15 years laters):

    I'm starting to have back pains again. Though, these seem to be much worst than the original pains I used to have. I believe that they're caused by the instrumentation around my spine. Maybe they've been dislodged, I'm not sure. However, I'm in the process of getting this looked into and it wouldn't surprise me if I need to have another operation.

    I can't sit in the same position for too long and whenever I'm laying down I can't move or get up without extremely bad pains - I actually scream out in pain.

    Looking back:

    I don't regret having my operation as I didn't have a choice at the time. However, I didn't expect to have recurring problems years after. So, I'd bare this in mind.

    Also, knowing what I do now, I would have done the following:

    As soon as I found out that I had scoliosis, I would have worn a cast to:

    - minimise the growth of the curve; and
    - delay the operation for as long as possible since the 'spinal fusion' stunted my growth - my torso is now out of proportion with my arms and legs.

    Note: the above may not be applicable to you as you've most likely finished growing.

    Other things to be aware of:

    Scarring - my scar starts at the bottom of my neck and goes around to my stomach. This may be an issue if you like to wear stuff like bikinis (f) or to be top-less (m) and etc.

    Nerve damage - along and around my scar line, I have no feeling due to damaged nerve tissue. This can take a while to get used to and also feels strange when someone else touches you when you're not expecting it.

    Pregnancy (f) - as far as I can remember, when you're giving birth your spine won't be as flexible so there could be complications with pregnancy.

    Airports / metal detectors - these usually go off for me and I have to be searched. But once they see my scar/ I tell them about my brace they’re fine.

    Exercise - lat pulldowns / bench presses - these can make your curve worse as I've experienced. I'd avoid any similar type of exercise. Also, any stretching of the spine is a big no-no. Do not do this with a fused/braced spine.

    Now, to answer your questions:

    As far as mobility goes, I can't recall how flexible my spine was before my operation however, I can't touch my toes or twist my spine horizontally. But these are things you will just get used to. Also, I don't swim because I am self-conscious about my scar and spinal curvature.

    Whether you have the surgery now or 5 years later: I don't think there will be much difference in your "health" but your circumstances could change... Never the less, if I were in your position, I'd probably first consider some non-evasive methods of reducing your spinal curvature such as a brace (specially made to counteract your curvature) or Yoga.

    As a bottom line, I'd only consider spinal fusion as a last resort. And also be aware of all the possible risks and complications that could occur such as infections or loosing your ability to walk. It's your spine after all!

    Anyway, I wish you all the best with your scoliosis and whatever decision you take.

    If you have any further questions feel free to PM me.


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  • ErinSueEErinSue Posts: 1
    edited 08/20/2015 - 7:50 PM
    I happened upon your post and had to join just because I felt compelled to write to you!
    I am 39 and at 16 I underwent a posterior and anterior spinal fusion for an 88 degree curve on top, 45 in the lumbar. I had 5 ribs removed, and rods from about t-3 to l-3,. I was in the hospital for about a month and a molded brace for a year. Five years later I was learning to snowboard, and doing yoga twice a week along with standing on my feet 8 hrs a day at my hairstyling job. I did end up having part of the bars removed after 10 years because one came loose at the top( no big surprise) but it was a blessing because it relieved the annoying pain of the bars in my thoracic area. I went on to have two pregnancies and natural child births….no problem.
    Through the years I have taken advil to deal with the pain. I am surprisingly flexible for being fused, but that has to do with the fact that they were able to leave me good motion in my lower back (VERY important to discuss), and also because I never sat around and let myself get stiff. As soon as I got the ok, I resumed everything I loved to do and my body just let me. I have hated my scar for 20 years…but I have now realized it is who I am and I wear it like a badge of courage (unless I'm wearing a nice dress;)
    My advice for you is, get a second and third opinion if you haven't already. I don't understand why this doctor would want to put you through this if the curve is not progressing anymore. They were able to bring my bad curve down to 38 degrees…not much different from what you have now. Find a scoliosis specialist….in fact some of the pediatric docs who do these surgeries all the time will see you up to age 26. After reading the last comment, I am thankful for the amazing surgeon I had. It makes all the difference.

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  • I am 17 years old (male) and I had my surgery a little over 2 months ago. The surgery was sucessfull and there was no issues like infection in hospital. If I am going to be honest, this operation is 10000x harder than anyone would ever tell you. You have to be very tough for the first few weeks but after the first month or so you will really start to notice the difference the surgery has made. The hardest part for me was being in hospital, I was in for a week because Morphine really disgareed with me and made me feel sick. Finally getting out of hospital was the best thing ever though . You will be very restricted for what you can do for months and that is something you are just going to have to deal with.
    I would say have the operation, although you may regret it at first, things will change but just remember it is a long road to recovery.
    Matthew sharples
  • SavageSavage United StatesPosts: 5,427
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  • Our story couldn't be more of a carbon copy. I was 24. No kids. Wasn't married. No obligations. I had a S curve that was found by accident and started progressing. Had a 12 vertebra fusion T3-L4. Recovery took a year. Forget mobility and flexibility for a long long -long time. Forget heels and bending. That life will be over. Then you learn a new one and the new normal sets in like 5 years down the line. 11years later I found that I didn't take it easy enough and kept bending like I wasn't supposed to. 4weeks ago I had another surgery to correct how stupid I was about the care with the first one so now they cut part of the old rods off and added new ones. Took the old screws (that already had backed themselves totally out of my spine from bending) and added 6 longer ones. Rebuilt the disc below my first fusion cause I wore that down to nothing. Fused me down another level so now I'm a 13 vertebra fusion. Reacted to all pain meds this time and was forced to go without. (First time I was on everything just fine). Guess my chemistry changed in 11 years so that sucked.
    My advise, do it young. And for god sake don't bend after cause you will just over compensate that which is not fused. No NSAIDs after surgery either. They prevent bone growth.
    Total life changing event. Scar from butt to neck.
    12 vertabrae fusion 2004 w/ rods for scoliosis. July 30, 2015 Discectomy & Laminectomy w/ mesh built disc & spacer, fusion one level down, new rods & new screws. Allergic to opioids. No medication except Valium & Tylenol.
  • blinniebblinnie Australia Posts: 2
    Hi there i gave had the spinal fusion im my lower spine and i have gad the rid placed in myspine after i had the operation i was out of action for 18 months like sports ect it didnt change my life i do normal things i even gave birth naturally to all my 4 children which the 1st was twins i have never looked back i was 14 when i had the op i am now 45 and still gas the rod in my spine

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