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Thread: Upcoming Scoliosis Surgery (Jan. 26th)

  1. #1
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    Default Upcoming Scoliosis Surgery (Jan. 26th)

    I'm having scoliosis surgery to correct my severe s curve, 70 degrees and 84, on January 26th. I've heard that you could go blind and become paralyzed if something goes wrong, and there is a higher chance of paralysis with higher degree curves?? (hope that isn't true haha)
    Anyways, I'm 16 years old so still in school, how long is the average recovery? I heard it was 4-6 weeks but is there any way to recover sooner? Or does it just depend on the person. What tests are done the day before surgery? I have to go and stay overnight before for testing but I'm not sure what will happen. My doctor said that pain and breathing problems aren't caused by scoliosis. That's pretty hard for me to believe.
    Does anyone here have experience with the Shriners Hospital in Spokane Washington?
    I'm not a fan of needles and I doubt many people are, so are there any blood tests that require a bigger needle than just the smallest? I have to get 5 blood tests done, pre-albumin, CMP, CBC w diff, PT, and PTT.
    What happens during those tests? Are they done all at once? Could one tube of blood be enough to test for all? Or are 5 separate tubes needed?
    What are some limitations after surgery?
    I think my fusion is from t4 to l2 or around that, I'm not sure.
    Any advice?

    Thanks in advance

  2. #2
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    Default Re: Upcoming Scoliosis Surgery (Jan. 26th)

    Hi and welcome

    sorry to hear the reason why you have been brought here. but it is a hard one to say on the grounds of blindness or paralysis. It depends on the person. but they have such advanced technology these days that it is VERY rare for it to happen, because they have spinal cord monitoring they are able to check if there is a 'break' in the nerves which if there is they will undo bits til the connection is complete again. this i believe does not have any long lasting damage that is associated with it. I had similar curve sizes to you, not sure how big but around the 70* mark and came out fine even with stiff curves.

    But it really depends on the person for how long recovery is. someone of your age typical is 'recovered' in 6 weeks. but some can take longer. play it by ear and see what happens. as no one can say what will be the case until you have it done. The main thing we recommend all post op patients is to listen to what their body is telling them, if it hurts, dont do it. but dont push too hard. I at 19 took around 3 months to be recovered, but then again i had a lot more done to my back than a normal person would have done to them.

    Er, its hard to say, as i had my tests done a few weeks before my surgery. But i had a ECG, bloods, lung funtion tests. general look over by a nurse. xrays. but it depends on the person on what needs to be done.

    but that is complete rubbish that the pain and breathing isnt because of the scoliosis. with the size of your curves is the general stage where it starts to effect your breathing sadly, i had issues with mine too. but also scoliosis does cause pain. out of curiosisty, who told you that scoliosis didnt cause those issues? was it a specialist or a general doctor?

    A few of our members have been admitted there, but because I am in the UK i cant say anything about them, so hopefully one of our members will be along shortly and help you out there. from what i remember, people havent been disappointed with what the outcomes or the surgeons there.
    Would you be able to expand on the abbreviations for me please and i might be able to help you out there.

    Tests will be done one after another. But I am afraid it will be 5 different tubes of blood. one will go to each department to be analysed. but now days, they have vacuum tubes, so only one needle is inserted and the tubes are insterted into the serunge without a tube (easiest way of describing it) and then it is drown autometrically into them. so it Should only take 2 mins max for them to take your bloods.

    Limitations off the back will be that you are banned from pretty much everything apart from walking. no heavy lifting, sports and the like til around 3 months and its at your surgeons discretion to take these off as they see fit.

    Hope this helps and makes sense as its late here right now. All the best.
    Jay
    Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
    Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half by the amazing, Mr Bernard.
    And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14

  3. #3
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    Default Re: Upcoming Scoliosis Surgery (Jan. 26th)

    Thank you!

    Hopefully my recovery isn't longer and that's good to hear about the spinal cord monitoring, I didn't know that!
    At shriners, I visited with a PA where I was told pain wasn't normally associated with it, same with the breathing. Then when I met with my surgeon, hes the chief of staff, he shrugged off the breathing as well, I didn't ask about pain that time. Both are specialized in treating children's orthopedics and I know the surgeon is a specialist. More concerned with breathing since the pain can be manageable. I'm looking forward to hearing from them if they're around!
    The abbreviations are, CMP (comprehensive metabolic panel), CBC w diff (complete blood count with differential), PT (Prothrombin time), PTT (partial thromboplastin time),
    I'm really happy to hear that it won't take long for bloodwork probably, needles are terrible

  4. #4
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    Default Re: Upcoming Scoliosis Surgery (Jan. 26th)

    welcome to the fourm! im Kara
    there is a chance of paralysis i only now of one case of where someone went blind.
    Kara
    24
    Posterior Spinal Fusion March 10,2010
    T4-L2

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    Default Re: Upcoming Scoliosis Surgery (Jan. 26th)

    Quote Originally Posted by HannahBear View Post
    Thank you!

    Hopefully my recovery isn't longer and that's good to hear about the spinal cord monitoring, I didn't know that!
    At shriners, I visited with a PA where I was told pain wasn't normally associated with it, same with the breathing. Then when I met with my surgeon, hes the chief of staff, he shrugged off the breathing as well, I didn't ask about pain that time. Both are specialized in treating children's orthopedics and I know the surgeon is a specialist. More concerned with breathing since the pain can be manageable. I'm looking forward to hearing from them if they're around!
    The abbreviations are, CMP (comprehensive metabolic panel), CBC w diff (complete blood count with differential), PT (Prothrombin time), PTT (partial thromboplastin time),
    I'm really happy to hear that it won't take long for bloodwork probably, needles are terrible
    Yes, it has only come around lately, not sure how many years though. But breathing is associated, due to the rotating of the spine impacting onto the lungs. but there is good news! surgery 'should' take away those issues. mine as i said were around you sizes and i had mine corrected to around half their size and i know have very minimal issues. the only issues i have with it is being very unfit haha.

    I am afraid i havent heard of any of those before, so i cant be of help in saying what they will involve.

    Needles are not too bad. but they dont hurt when theyre doing it, just let them know that you hate them and theyll distract you and before you know it, they'll have what they need.
    Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
    Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half by the amazing, Mr Bernard.
    And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14

  6. #6
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    Default Re: Upcoming Scoliosis Surgery (Jan. 26th)

    Hi, and welcome!
    I had spinal fusion surgery when I was 16 for a 69 degree thoracolumbar curve. As others have commented, the chance of paralysis and blindness happening is very low due to spinal cord monitoring. I don't know whether having a larger curve increases the risk of complications (unless the curve is sort of 100 degrees or something, in which case I believe it does become more dangerous), but having other conditions or a complex, non-idiopathic case of scoliosis (e.g. neuromuscular scoliosis) increases the risk of complications.
    A quick look at a review paper from 2008 (http://www.ncbi.nlm.nih.gov/pmc/arti...8-7161-3-9.pdf) suggests that the prevalence of nerve damage in idiopathic scoliosis is 1.5%, which includes peripheral damage as well as paraplegia and quadriplegia.
    However a more recent study (2014: http://link.springer.com/article/10....586-014-3197-y) suggests even lower rates - even including non-idiopathic cases, it suggests that the rate of complete paralysis is 0.13%, incomplete is 0.32%, and incomplete and resolved (by which I presume they mean it was temporary) is 0.65%. They also had a very large sample size - over 9000 people.
    I was back at school after 5 or 6 weeks (fortunately I had mine done over the summer between GCSEs and A Levels). I felt okay-ish after about 4 weeks - that was when I could start to do normal things like going to friends' houses, some light exercise, etc.
    I have been told that you can speed your recovery time by being generally healthy and fit, but I'm not sure how true this is!
    Pain and breathing can definitely be related to large curves, as others have said, and hopefully the surgery will help with that!
    None of my blood tests required large needles - I remember it all being over in about 2 minutes! I don't know exactly what I had done, though.
    Regarding limitations after surgery, I don't really have any! I have no restrictions from my surgeon, and the only thing it affects me with is flexibility and some residual back pain.
    Do let me know if you have any questions - feel free to message me!
    Last edited by MemmaLou; 11th January 2016 at 01:50 PM. Reason: Forgot something!
    Emma
    Midlands Youth Rep for SAUK
    Anterior surgery in 2010 (age 16) for a 69 degree thoracolumbar curve at QMC - fused T10-L3.

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    Default Re: Upcoming Scoliosis Surgery (Jan. 26th)

    spokane shriners i heard of but i neaver been there. i was a patient at the shriners hospital in sacramento california
    Kara
    24
    Posterior Spinal Fusion March 10,2010
    T4-L2

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    Default Re: Upcoming Scoliosis Surgery (Jan. 26th)

    Thank you all!

    Hopefully after surgery my breathing does improve, it's pretty annoying having to deal with it. The blood work wasn't too bad! It was all over really fast but it did leave my shoulder sore..got it done yesterday and it's still a bit sore.
    I thought of another question though, when the cannula is put in, do they do it before you're asleep or after? Do you feel it? If so is it uncomfortable? How much weight is lost too? I'm 4'9 and around 100lbs if that helps. I've read where some people have lost a lot, and I don't really want that happening to me as well.

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    Default Re: Upcoming Scoliosis Surgery (Jan. 26th)

    It really depends on the anaesthetist when it is put in. most will be put in after you have gone under, with one being put in while you are awake. in total i had 3 or 4. two or 3 normal ones and one arterial one. the art' line was the one that hurt the most, but that only was the case when i pushed myself up. most canulars you wont feel unless you move them about.

    as for the weight loss, it depends on the person, how quickly you get walking and eating again. for instance, i slept for a week (due to the meds i was on) and didnt eat for that amount of time so i went from around 58kg (128lbs) to around 52kg (114lbs). but if you get active from when they try and get you moving and are able to eat, this should not be an issue.
    Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
    Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half by the amazing, Mr Bernard.
    And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14

  10. #10
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    Default Re: Upcoming Scoliosis Surgery (Jan. 26th)

    I had one cannula put in while I was awake, I think, and a few more once I was asleep. It varies, though - you'll have to ask the anaesthetist when you get there!
    I lost about 7lbs (I'm 5'8 and was 150lbs pre-surgery) - I didn't eat very much for the first couple of weeks, and did the minimum activity I thought I could get away with!
    Maybe you should eat extra cake/chocolate over the next few days to prepare for any potential weight loss? I'd love to have a reason to eat more!
    Emma
    Midlands Youth Rep for SAUK
    Anterior surgery in 2010 (age 16) for a 69 degree thoracolumbar curve at QMC - fused T10-L3.

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    Default Re: Upcoming Scoliosis Surgery (Jan. 26th)

    I forgot to mention, if this is a problem, some hospitals can put you onto a special diet, which will contain more fat and things you need to keep weight on. so it could be worth mentioning this to your surgeon/ doctors to see if this is a possibility for you.
    Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
    Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half by the amazing, Mr Bernard.
    And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14

  12. #12
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    Default Re: Upcoming Scoliosis Surgery (Jan. 26th)

    Thank you I'll definitely eat some more! My bloodwork turned out good but my protein was a little low, probably because I'm a vegetarian, but they said it was okay. Was being wheeled into the operating room scary?

  13. #13
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    Default Re: Upcoming Scoliosis Surgery (Jan. 26th)

    It a little scary
    Kara
    24
    Posterior Spinal Fusion March 10,2010
    T4-L2

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