I got harrington rods implanted in 2002 and agree with this list. She mentioned feeling alone and I know that quite well. I look fine with no wheel chair or obvious deformity and society does not make this big deal about major scoliosis so people think I am a person who had corrective surgery years ago. But this is life-long condition. Not like a flaw that was simply corrected years back. I don't want to complain about all the pain and discomfort cause by a condition that medicine cannot cure. No one is going to rescue me. The calvary isn't coming. Big organizations won't be hosting walk-a-thons with ribbons to wear. Professional athletes won't be adding special badges to their uniforms to show support for scoliosis. All I have is myself and as lonely as that can be, damnit it is all I need! A few days after the surgery, the pain was so intense I could barely walk a few feet without the assistance of nurses and I feared having to try again. That night, I realized no one could walk for me and that's when I discovered untapped strength as I found a way to walk the floor of the hospital. You may be alone, but you learn more good things about yourself than you would have without the condition. God Bless.
Your list of items is spot on. Had my surgery 3 years ago. Although my expectations were managed by my doctor, reality can be much different. The recovery, pain, and numbness far exceeded expectations. I am fused T2 to Pelvis with a scar from the base of my neck to the crack of my ass. Surgery was 12 hours. I was 63 at the time of the surgery so that I’m sure made it more difficult. I still have lots of numbness around the surgical area. It has improved, but still a long way to go. Initially while it heals the itching from nerve endings can drive you crazy but it passes. Having said all that, with some limitations, I can do most things. But in some cases I may do them differently. Most importantly, as long as I don’t do anything stupid, I am pain free.
I don't know who needs to hear this, but my physiotherapist taught me that you have to compress your ribs (the same way we do when laughing or coughing) in order to fix the ribcage. So, learn how to practice it and remember to suck your stomach in, I've tried it before and it truly helps, but you have to learn how to manage breathing. *In case you want to practice it: inhale and, while you exhale, compress your ribcage and suck in your stomach at the same time (kind of like vacuums but remember to compress your ribcage as well.. do this everyday any times you want, the more you do, the faster the results) hope this helps :)
@@attilakovacs125 To be honest, I just followed my physiotherapist's instructions. But, I did find this article that talks about the technique as a way of fixing flared ribs and explains it better: elevatephysio.com.sg/flared-ribs-how-to-fix/ Practicing that breathing technique helped my body a lot, my stomach started to look more "normal" and it doesn't take long to show the results. Hope this helps!
My daughter is having her scoliosis surgery later this year. She is 12 and I am so terrified for her. Thanks for this video because I wanna prepare my daughter mentally and physically for this. I’ll do everything in my power to make sure she is and feels supported every step of the way.
I just want to say that you seem to have a beautiful soul. While watching this video you are smiling the entire time and it really speaks a lot to your positivity. You're adorable and I hope everything goes very well for you in life! That's one hell of a surgery to endure and recover from and to see such a happy face is breathtaking.
Thank you so much... Your videos motivate me so much. It's been a year since my operation and I've been experiencing a lot of shooting nerve pain and I get tired easily from the simplest things. It's so exhausting, trying to act like I'm all healed up and ready to face the world again. It's a really lonely journey but I've got this 😊
You’ve got this! Hope things have got slightly better for you since this comment. It’s crazy how fast time goes so hoping for the best for you! I also experienced a lot of shooting pain which actually lasted many years but now I don’t experience that anymore.
I had that surgery 2 months ago and maybe it was just that I had a good surgeon but I went through none of this. Whatever this video does, don't let it put you off surgery as much as it probably does. I'm VERY glad that I didn't watch this video before my surgery. Surgery changed EVERYTHING for me for the better. I feel like I've been given my life back. (A life I would've NEVER known I was missing out on if I hadn't had that surgery.) I had pain after the surgery but it was never uncontrollable because they give you very strong painkillers. By 3 weeks after the surgery, I was already able to go shopping and was in no pain. I was delighted because previous to the surgery, I'd always deep down be thinking about my back pain instead of enjoying shopping.
Found your video very helpful since my daughter needs spinal surgery for her scoliosis. I will be able to plan for her to be isolated and not see friends which will probably be the hardest part for her. ❤️
Dear Sarah, You are beautifull even with that lump on your back! Good for you , for giving this informations! Myself I have scolio and it is not painfull. I'm thinking of going to surgery because I have dificulties breathing! However, I was guessing those things you've just said here might happen to me. Take care, Ion
My sclouisis is the same as yours were my ribs and also my hips stick out aswell. I haven't had spine fusion yet. I have chronic pain due to my sclouisis and take pain meds. I have chronic illness so for me I'm not getting the fusion until my curve gets to the point were it affects my health. My special needs sister had sclouisis too and she had it very bad and her curve was S shaped and it got bad and it affected her lungs and breathing. So she got it spine fusion then she also contracted Mersa which is in her back. So that's another reason to not get spine fusion because I don't want to end up with Mersa like my sister did
I’m so scared after watching this video. I was pretty confident gained trust from many videos that I can do this I should do this surgery go for it I am strong but now watching this video demotivated me discouraged and also I feel so damn scared and I think I will back off now and I think I can live with my 3 severe angles of 72deg 45 deg 20 deg respectively
speaking of the rib hump on the back as well as the rib flare at the front, how much of this remitted after surgery and for up to how long did it take to remit and was it substantial? Because seeing your immediate post op pictures when they were removing your dressing, your back looked perfectly flat at the time. Did they do or at least propose a costoplasty? How predictable are the results of the rib hump correction pre operatively, or is it entirely sporadic and anecdotal results outside of the surgeon's control?
They said that I could have a costoplasty but they didn’t recommend it as they said the surgery would be ‘enough’. I decided not to have the costoplasty. Yes from the images, and when other people look at my back my back rib hump isn’t very significant, it is just something I am personally aware of. After surgery though both the front and back rib humps have reduced, I would say over a period of about 3 years post surgery. Definitely talk to your surgeon about costoplasty if you are interested in having it while having your scoliosis surgery, it seems like quite a regular thing they do. Thanks for the comment, Sarah
@@sarahlouise4066 Glad you decided against the costoplasty because that is known to permanently lower your lung capacity levels post op especially if done when the patient is an adult. However, I would like to know how much did your hump from the back and front revert and come back out after surgery and for how long did this process take until it settled to where it is now, since this is quite a common occurrence happening amongst most patients who had the surgery.
Surgery is very different for everyone- you may come out of your operation pain free in a matter of months! There has been lots of advancements in surgery! All the best for your surgery- it’s okay to be worried but the people doing your operation know what they are doing! Sarah x
My daughter is 13 and was just diagnosed. She has no pain, they want to operate this Summer. Would you do it all over again or just live with your scoliosis and wait it out?
Aw bless your daughter! I was in the same position at that age with no pain, honestly I would do it all again, my spine would have got worse over time so I would have ended up having the surgery at some point anyway. She has to want the surgery though so she’s in the right mindset. This is all just my experience though and everyone is different. I wish you both all the best xx
@@sarahlouise4066 as mentioned from before, not everyone will continue to worsen throughout time. Most actually stop worsening by the time the have ended growth. I truly believe the ortho doctors are scaring patients too much, since even if the spine worsens it doesn't necessarily mean trouble(pain, poor health) and if it ever gets to that point as an adult you can still go and have it done, why compromise your child's pain free life currently with this condition. I would wait it out if I were your daughter, since there is a good chance of ending up in more pain after surgery than before, and revision surgery/late complications are still likely scenarios in the future for your child.
When I’m working from home it’s around a 3/10 daily pain but this increases to 8/10 when in the office. Varies a lot! This is just my experience though☺️
I got harrington rods implanted in 2002 and agree with this list.
She mentioned feeling alone and I know that quite well.
I look fine with no wheel chair or obvious deformity and society does not make this big deal about major scoliosis so people think I am a person who had corrective surgery years ago. But this is life-long condition. Not like a flaw that was simply corrected years back.
I don't want to complain about all the pain and discomfort cause by a condition that medicine cannot cure. No one is going to rescue me. The calvary isn't coming. Big organizations won't be hosting walk-a-thons with ribbons to wear. Professional athletes won't be adding special badges to their uniforms to show support for scoliosis. All I have is myself and as lonely as that can be, damnit it is all I need!
A few days after the surgery, the pain was so intense I could barely walk a few feet without the assistance of nurses and I feared having to try again. That night, I realized no one could walk for me and that's when I discovered untapped strength as I found a way to walk the floor of the hospital.
You may be alone, but you learn more good things about yourself than you would have without the condition. God Bless.
Your list of items is spot on.
Had my surgery 3 years ago. Although my expectations were managed by my doctor, reality can be much different. The recovery, pain, and numbness far exceeded expectations.
I am fused T2 to Pelvis with a scar from the base of my neck to the crack of my ass. Surgery was 12 hours. I was 63 at the time of the surgery so that I’m sure made it more difficult. I still have lots of numbness around the surgical area. It has improved, but still a long way to go. Initially while it heals the itching from nerve endings can drive you crazy but it passes.
Having said all that, with some limitations, I can do most things. But in some cases I may do them differently. Most importantly, as long as I don’t do anything stupid, I am pain free.
I don't know who needs to hear this, but my physiotherapist taught me that you have to compress your ribs (the same way we do when laughing or coughing) in order to fix the ribcage. So, learn how to practice it and remember to suck your stomach in, I've tried it before and it truly helps, but you have to learn how to manage breathing. *In case you want to practice it: inhale and, while you exhale, compress your ribcage and suck in your stomach at the same time (kind of like vacuums but remember to compress your ribcage as well.. do this everyday any times you want, the more you do, the faster the results) hope this helps :)
Hi, Michelle ! Where can i read about this technic ?
@@attilakovacs125 To be honest, I just followed my physiotherapist's instructions. But, I did find this article that talks about the technique as a way of fixing flared ribs and explains it better: elevatephysio.com.sg/flared-ribs-how-to-fix/
Practicing that breathing technique helped my body a lot, my stomach started to look more "normal" and it doesn't take long to show the results.
Hope this helps!
@@Michelle-py7oe Thank you , Michelle.
Omg I hope I remember this after my surgery
@@nindie okkk lol but please do it when you feel better, and slowly, just in case it hurts :) good luck on your surgery tho
My daughter is having her scoliosis surgery later this year. She is 12 and I am so terrified for her. Thanks for this video because I wanna prepare my daughter mentally and physically for this. I’ll do everything in my power to make sure she is and feels supported every step of the way.
i am 13 and i am having my sugrey next month
I just want to say that you seem to have a beautiful soul. While watching this video you are smiling the entire time and it really speaks a lot to your positivity. You're adorable and I hope everything goes very well for you in life! That's one hell of a surgery to endure and recover from and to see such a happy face is breathtaking.
Thank you so much... Your videos motivate me so much. It's been a year since my operation and I've been experiencing a lot of shooting nerve pain and I get tired easily from the simplest things. It's so exhausting, trying to act like I'm all healed up and ready to face the world again. It's a really lonely journey but I've got this 😊
You’ve got this! Hope things have got slightly better for you since this comment. It’s crazy how fast time goes so hoping for the best for you! I also experienced a lot of shooting pain which actually lasted many years but now I don’t experience that anymore.
@@sarahlouise4066did you hips go back to normal after spinal fusion and how long did it take.
I had that surgery 2 months ago and maybe it was just that I had a good surgeon but I went through none of this. Whatever this video does, don't let it put you off surgery as much as it probably does.
I'm VERY glad that I didn't watch this video before my surgery. Surgery changed EVERYTHING for me for the better. I feel like I've been given my life back. (A life I would've NEVER known I was missing out on if I hadn't had that surgery.)
I had pain after the surgery but it was never uncontrollable because they give you very strong painkillers. By 3 weeks after the surgery, I was already able to go shopping and was in no pain. I was delighted because previous to the surgery, I'd always deep down be thinking about my back pain instead of enjoying shopping.
thank u for this
Temporary solutions will lead to lifelong pain
@@lexohey4718 I'm so glad that I could help at all ❤️❤️❤️
@@Benny_B0O0 Temporary solutions like bracing... or are you calling surgery a temporary solution???
Glad to know that you have been fine. Who was your surgeon
I live with Harrington rods since 2002. I agree with this entire list. Thank you for this.
Thank you! Hope you are doing well☺️
Found your video very helpful since my daughter needs spinal surgery for her scoliosis. I will be able to plan for her to be isolated and not see friends which will probably be the hardest part for her. ❤️
How long did it take until you were able to return to normal activity?
Dear Sarah, You are beautifull even with that lump on your back!
Good for you , for giving this informations!
Myself I have scolio and it is not painfull. I'm thinking of going to surgery because I have dificulties breathing!
However, I was guessing those things you've just said here might happen to me.
Take care,
Ion
I am having surgery within 60 days. This is good stuff thanks.🤗
All the best for it, hope it goes well and your recovery is smooth!❤️
My sclouisis is the same as yours were my ribs and also my hips stick out aswell. I haven't had spine fusion yet. I have chronic pain due to my sclouisis and take pain meds. I have chronic illness so for me I'm not getting the fusion until my curve gets to the point were it affects my health. My special needs sister had sclouisis too and she had it very bad and her curve was S shaped and it got bad and it affected her lungs and breathing. So she got it spine fusion then she also contracted Mersa which is in her back. So that's another reason to not get spine fusion because I don't want to end up with Mersa like my sister did
Wishing you and your sister all the best for the future!!
I’m so scared after watching this video. I was pretty confident gained trust from many videos that I can do this I should do this surgery go for it I am strong but now watching this video demotivated me discouraged and also I feel so damn scared and I think I will back off now and I think I can live with my 3 severe angles of 72deg 45 deg 20 deg respectively
Omg same iv got a rib hump at the back which is so annoying. It feels like your still deformed
speaking of the rib hump on the back as well as the rib flare at the front, how much of this remitted after surgery and for up to how long did it take to remit and was it substantial? Because seeing your immediate post op pictures when they were removing your dressing, your back looked perfectly flat at the time. Did they do or at least propose a costoplasty?
How predictable are the results of the rib hump correction pre operatively, or is it entirely sporadic and anecdotal results outside of the surgeon's control?
They said that I could have a costoplasty but they didn’t recommend it as they said the surgery would be ‘enough’. I decided not to have the costoplasty. Yes from the images, and when other people look at my back my back rib hump isn’t very significant, it is just something I am personally aware of. After surgery though both the front and back rib humps have reduced, I would say over a period of about 3 years post surgery. Definitely talk to your surgeon about costoplasty if you are interested in having it while having your scoliosis surgery, it seems like quite a regular thing they do. Thanks for the comment, Sarah
@@sarahlouise4066 Glad you decided against the costoplasty because that is known to permanently lower your lung capacity levels post op especially if done when the patient is an adult. However, I would like to know how much did your hump from the back and front revert and come back out after surgery and for how long did this process take until it settled to where it is now, since this is quite a common occurrence happening amongst most patients who had the surgery.
Where is the driving video?
Omg im so scared to get the surgery in 2 weeks, im also pain free now but im afraid the surgery will make me be in pain
Surgery is very different for everyone- you may come out of your operation pain free in a matter of months! There has been lots of advancements in surgery! All the best for your surgery- it’s okay to be worried but the people doing your operation know what they are doing! Sarah x
Where are you - globally ? - there maybe be an ASMIO near you: goodback.co.uk/2021/07/13/where-to-find-the-asmi-pamm/
My daughter is 13 and was just diagnosed. She has no pain, they want to operate this Summer. Would you do it all over again or just live with your scoliosis and wait it out?
Aw bless your daughter! I was in the same position at that age with no pain, honestly I would do it all again, my spine would have got worse over time so I would have ended up having the surgery at some point anyway. She has to want the surgery though so she’s in the right mindset. This is all just my experience though and everyone is different. I wish you both all the best xx
@@sarahlouise4066 Thank you
@@sarahlouise4066 as mentioned from before, not everyone will continue to worsen throughout time. Most actually stop worsening by the time the have ended growth. I truly believe the ortho doctors are scaring patients too much, since even if the spine worsens it doesn't necessarily mean trouble(pain, poor health) and if it ever gets to that point as an adult you can still go and have it done, why compromise your child's pain free life currently with this condition. I would wait it out if I were your daughter, since there is a good chance of ending up in more pain after surgery than before, and revision surgery/late complications are still likely scenarios in the future for your child.
Do you feel pain now?
yes sitting can be painful , always check the church phue
Do you go to the gym? i have heard that if someone build their muscles that they don't have pain.
Sorry for my bad english
Yes I do, moving and building muscles does help I think but doesn’t fix!
are you still in pain? 1-10?
When I’m working from home it’s around a 3/10 daily pain but this increases to 8/10 when in the office. Varies a lot! This is just my experience though☺️
@@sarahlouise4066 Thanks for sharing. Can I ask what pain medications you are taking?
@@claus1225 I don’t take any medication, I only take paracetamol, I try not to take painkillers☺️
@@sarahlouise4066 thats brave.