It has been 34 days since I originally found out my surgery was scheduled for the 14th of May, 2010. It seems like much longer though, considering I have known I would need this surgery since la
st September, when I was first diagnosed with severe double curved scoliosis.Before I knew I had scoliosis, I suffered many painful days wondering why after sport I would feel crippled, and I couldn't walk for long periods of time without my back stiffening. Not to mention I couldn't sit very comfortable on any chair, and sleeping was becoming more uncomfortable as well. However, last September, my doctor, diagnosed me with scoliosis after doing some tests and me getting x-rays. To say the least, I was shocked by the X-rays I saw, as I had never seen anything like them. (The X-ray to the right is the first x-ray I had seen of my spine).
st September, when I was first diagnosed with severe double curved scoliosis.Before I knew I had scoliosis, I suffered many painful days wondering why after sport I would feel crippled, and I couldn't walk for long periods of time without my back stiffening. Not to mention I couldn't sit very comfortable on any chair, and sleeping was becoming more uncomfortable as well. However, last September, my doctor, diagnosed me with scoliosis after doing some tests and me getting x-rays. To say the least, I was shocked by the X-rays I saw, as I had never seen anything like them. (The X-ray to the right is the first x-ray I had seen of my spine).
As you can see, I have two curves in my spine. The top one measured at 55 degrees, and the bottom one was 60 degrees. However, when my doctor measured these, I still had two years left of spinal development, meaning that I really needed surgery, otherwise the curves would keep progressing as I developed to the point they could both reach over 100 degrees. So after several more x-rays, a very long MRI session, other appointments, and a whole lot of pain, I am 20 days away from having the surgery that will ultimately change my life, for not just now but the future (if I wasn't to go ahead with the surgery, as I grew older I would end up having one curve significantly over take the other one, and I would begin to tilt sideways).
If you refer to the picture showing the spine sections, I am having spinal fusion to correct scoliosis from T4 to either L3 or L4, which encompasses 13/14 vertebrae. My doctor would prefer to go to L3, as if he goes to L4 I will lose a lot of movement and flexibility. Going to L3 just means I will have a bit more movement. I am having posterior surgery, which means I will have a large scar down the middle of my back.I will continue to blog as my countdown to surgery shortens, and will probably mention things i have left out in this blog.
Hi Ebony I just found your blog last night and I think its great. I was just wondering how old you were when you had this surgery? My daughter has just turned 11 and has been diagnosed with a 52 degree curve and the surgeon is recommending surgery very soon. Also how are you feeling now - do you still get pain? Is there anything in daily life that you can't do now you have had surgery. I would really value your insights...Anne
ReplyDeleteHi Anne, I was 16 at the time of my surgery. Your daughter is needing the surgery at quite an earlier age than me; my scoliosis was only diagnosed less than a year before my operation so it was found too late to do anything but operate. Now, being a few months off of it being 2 year since I had the surgery, I am feeling pretty good. I can definitely say it is a slow process to recover, but that might just be me. I still get pain, but nothing like it was over a year ago! So it is definitely getting better and I can tell the improvements. In terms of what I cannot do, I am no where near as flexible as I used to be (but this is something I can work on). I can't sit in the one position or walk for long periods without discomfort either, but other than that I can't really think of anything else I can't do - I just have to be a bit more careful of how I do things as I get pinching pains near the incision if I move strangely, and I also get bad pain in the lumbar region of my back. If you need anymore help, I am more than willing to answer your questions. All the best of luck to your daughter!
DeleteHey, I'm getting scoliosis surgery and I'm 16 too, and also from NSW (Sydney). What hospital did you get it done at and who was your surgeon? I love your blog btw!
ReplyDeleteWow, double comment. But I saw your "goals" list and one of them said "Raise money for Sydney Children's Hospital Foundation", that's actually where I'm getting my surgery done. Was your surgeon Dr Gray by any chance? :')
ReplyDeleteHey Anita, I was 16 at the time of my operation in 2010 and it has now been almost 2 and a half years since then. It seems like you have pieced together where I got my surgery done and my surgeon :) if you have any questions about anything related to the operation or post-operation then feel free to comment below! Sorry for the delay in responding, I have been very busy with Uni! Best of luck for your operation if I do not hear back from you, Dr Gray is an incredibly great surgeon! :)
DeleteHahaha yes I did, and I was successful! I hope this doesn't seem too creepy, haha. I only really have one question since I'm on the waiting list for surgery - and that is, how long did you wait for your surgery?
DeleteI got told that private health insurance doesn't make a difference so I got put on a waiting list and the letter said I could wait up to a year since it's a category 3 for elective surgery. And I'm in Year 11/Year 12 in Term 4, so I really just want to get it over and done with and to not have it interfere with schooling.
Good luck with Uni :) And thank you for responding! x
From the time I found out I had scoliosis/needed surgery in August of 2009 I waited 9 months until May 2010 to have it - and was fortunate enough in getting it done then as someone had pulled out (so i did not attend term 2 of year 11 at all, but it did not effect my marks thankfully). However, I had to wait for as much time as possible as I was a slow developer and far from finished growing, but my curves were also progressing quite fast. If that person had not pulled out, I was expected to have the surgery in September/October - so basically when you get it done just depends on timing and when you can be fitted in with everyone else also needing it! I really hope it does not interfere with your schooling too much if possible, but it really is so unpredictable about when you will have it as I was only called up about 3-4 weeks before my operation date telling me I could have it. If you have anymore questions overtime I am happy to respond :) Good luck with the rest of year 11!
DeleteHey, it's been a while, but I thought I'd let you know that I got the letter last week and my operation is scheduled to be 11th September! So I miss out on my yearly examinations and most probably the first few weeks of term four! I don't really have much questions (I guess I'm just really nervous, haha!) but what sorts of things did you get up to in your pre-admission clinic? I'm kind of interesed since I haven't yet received my letter for that yet! And thank you :)
DeleteThat's great that it is scheduled for September, so hopefully you don't miss out on too much of year 12! When I had my operation I missed out on pretty much all of term two of year 11, but everyone's recovery time differs I guess! I think it is pretty normal to be nervous, I know I definitely was but finding out when my operation was about a month beforehand (which it sounds like you have) helped me relax more by the time I had my operation :) I had my pre-admission clinic a day or two before I went in for my operation, I remember quite a few nurses/physios/anaesthetist came in and just talked through parts of the operation, what would happen, and the post-op care so for example the physios taught me how to log roll out of bed (which I think they will probably show you as well) as well as some breathing and coughing exercises. I also had some blood taken to be transfused back into myself if I lost any blood during the operation, which did not take very long or hurt at all. A lady also showed me around one of the wards so I had an understanding of where I would be. Basically they just try to make sure you are informed about the operation, and they will ask you some questions as well if I remember correctly :) If you need to ask more questions just let me know!
DeleteWow I just noticed your title was "20 days to go" and today is actually 20 days until my operation! Oh it sucks that you missed out on the entire term 2 - did you return full time or part time in term 3 then? I don't know how I can handle sitting down in class for so many hours after the surgery, it must have been so uncomfortable! Yeah I guess it will help me relax a bit but you kind of have those days where you're like "oooh, can't wait until surgery" and those days where you're like "I don't want to do this." Oh thank you for telling me this :) I actually got my pre-admission letter last week and it wasn't the most informative letter because it just told you what time you had to be there and what to bring with you haha. Was your pre-admission 4 hours long too?
DeleteHey, I was just messaging you to see how your surgery went as it has just been over two weeks so I am guessing you have probably been home for a bit over a week now! Sorry for not messaging you early but I keep getting side tracked with university work! I really hope the operation went as expected as well as your time in hospital, and I hope that you are not in too much pain. If you have any questions about recovery from the surgery let me know and I am more than willing to answer (: One thing I can tell you is to get lots of rest, I remember having long naps after I would have lunch until a bit before dinner as I was always so exhausted from the pain and tablets haha, but hopefully you have an amazing recovery! (:
DeleteHey, I've been meaning to update you on my surgery and also to reply to your message back in August (sorry, I was so pre-occupied with studying for my prelims and also had a fever the week before my surgery!) about pre-op, which was really helpful by the way! So, thank you!
DeleteThe surgery went amazingly well :) I was so surprised because the amount of pain was 0/10 for most of the stay and it was never above a 5. Here's a photo of my post-op x-ray if you're interested! http://24.media.tumblr.com/tumblr_ma7vjfZ5lb1rreuhto1_500.jpg Yes! I know what you mean by the naps! I have always have one in the afternoon and in the evening too :P I had my 2-week post-op appointment on Wednesday and my surgeon said I was doing really well and was "4 weeks ahead of schedule" which was amazing to hear :)I have been off pain meds since day 9 which is good but there's always a little discomfort when it comes to lifting not-so-heavy things like my MacBook! Hope you're doing well in uni! What are you studying? x
No worries about not replying to my message from August, I am glad the message helped though and I hope you went well in your prelims! I am so happy to hear how you have progressed :) Your x-ray is great by the way, Dr Gray has done a great job! What were your curve/s before surgery if you do not mind me asking as the correction of your spine is amazing :) You sound like you have done a lot better than me, I had a slow recovery and cannot believe you were off of pain meds at 9 days as I was on them for 3 months, and the fact your pain did not get above a 5 in hospital is amazing!! With how you have recovered I am assuming you cannot have been in hospital too long and were probably the nurses dream patient haha :) I am actually doing nursing at uni, my atar pretty much meant I could do anything I wanted to but after my time in hospital for my spine surgery I decided that regardless of my marks I wanted to be a paediatric nurse as they inspired me :) I really hope you continue to recover the way you have been, and lets hope your pain stays minimal! x
DeleteSorry for the lat reply, but your surgery is so close! In term 3 I went back full-time but a few times I had to leave school because of pain. I actually had to take a pillow to school which fitted in my bag (a handbag as I could not use a backpack) and thankfully the school let me wear a cardigan rather than making me try put a jumper over my head as that hurt a bit too much. I know exactly what you mean! I was really excited sometimes, and so worried other days and even after the surgery some days I was so glad I did it and other days I could not believe what I had done! Unfortunately for me I had no choice about the operation as I would have ended up in a wheelchair as I got older due to how large my curves were! I actually kept a diary just before and well after my surgery to give me something to do and according to that my pre-op only went for three hours, i meet two physios on the day, as well as an occupational therapist, the anaesthetist, had blood taken and some x-rays - I am glad I kept this as I definitely do not remember all this! So hopefully yours does not go for four hours! But good luck with it and message me if you have more questions! :)
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