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Im 29 and I’m 13 years in and I’ve been house bound for most of it because of fear of being paralyzed if I did anything because my doctor send I could be and it’s difficult to bend my legs so I use my feet to pick things up the last year I rode a hoverboard and a scooter bike and fell off both but I stopped riding them out of fear and I move beds and dressers around but I’ve been inactive and very lazy for most of it because of fear I don’t want to be paralyzed haven’t even had a job or anything like that because I’m afraid even 13 years in I can’t ride a bike or drive a car or swim out of fear I never learned how

Im 29 and I’m 13 years in and I’ve been house bound for most of it because of fear of being paralyzed if I did anything because my doctor send I could be and it’s difficult to bend my legs so I use my feet to pick things up the last year I rode a hoverboard and a scooter bike and fell off both but I stopped riding them out of fear and I move beds and dressers around but I’ve been inactive and very lazy for most of it because of fear I don’t want to be paralyzed haven’t even had a job or anything like that because I’m afraid even 13 years in I can’t ride a bike or drive a car or swim out of fear I never learned how

Three free vertebrates in the lumbar is quite good. Many people get fused to pelvis. Was post surgery pain horrible? Did you throw up? People are telling terrifying stories about their post surgery experience

Finally someone who talks about scoliosis.

I had the surgery when I was 13 in 2001. Nobody prepared me for life afterwards and all of the adults around me told me I was back to normal. I couldn’t touch my toes, I couldn’t dance anymore, my life changed in so many ways ( not even touching on the bullying & subsequent SI & eating disorder) and this video - 23 years later - is the FIRST time I’ve seen true confirmation that I’m not alone & my mobility issues are because of my back. I assumed they were, of course, but mentioning it to doctors usually resulted in disinterested dismissals and, when I was a teenager, a note to get out of the sit and reach. There’s always been this niggling feeling that really I was just too lazy and out of shape to do things. I never found anyone else with the same hardware & mobility issues- the only other person I met who had this surgery was a professional dancer, which was what I WANTED to be beforehand, so I’ve always compared myself to her and assumed I should be able to do anything she could. I understand now that everyone is different, of course, but subconsciously I’ve always blamed myself for not being able to move “normally”. It’s affected my relationship with my body in so many ways and I almost cried when I saw this reel. Thank you, thank you, thank you.

I have scoliosis to!

Thanks for speaking about what iam facing individuallly on scoliosis

Thank you for your video! I have scoliosis and have had surgery also. Everything you mentioned is also true for me, you put it so accurately. I never like to sit so people will see my back but will pick a chair near the wall if possible during meetings at work. So appreciate your experience!

When I was 12 years old my mother was getting married and her seamstress had taken my measurements for my dress fitting she then noticed that my back had a curve she told my mother grandmother and aunt that my mother should take me to have my back checked by a physician and that I may have scoliosis my family was not aware of scoliosis what is was. My mother did take me to see a physician and it was in fact scoliosis. The doctor then put me on a back brace I wore it for over a year to see if my spine would be aligned straight and it did not help it also made it extremely uncomfortable I did not like to wear it. So at 14 years old the physician gave my mother an option he said that he could do spinal fusion to correct my spine I had the surgery it was extremely painful my spine did not come out 100% straight. During my teenage years in middle school and in high school I was so self conscious of my back and didn't want anyone especially my peers to know I had a messed up back I dealt with this issue all of my teens and 20s I hated the way I looked I felt deformed and just weird and I thought all of my peers would think so too. After my surgery I was not able to do any of the activities that I used to like cheerleading my self esteem was at a all time low all the cute clothes like the backless tops I had to avoid because I didn't want anyone to see me even though I wanted so bad to wear them. I hated myself. Now in my 40s I still am a little self conscious but I have found ways to dress in a way that I feel most comfortable. I am however considering if possible some reconstructive surgery for my back. I just want to say that I can relate to your story because I too went through self body image because of scoliosis.

Im at a high chance of having scoliosis surgery, I am a dancer and I am so afraid that i wont be able to go back to my skills. I am also on a drill team where requires a LOT of back flexibility, and dancing is my passion i want to be a Dallas cowboy cheer leader. Your videos have gave me an understanding of what i wont be able to do post surgery.

I’ve had scoliosis since I was a child but only recently started having pain. My scoliosis has been progressing and the uneven shoulders, tilted upper body and uneven hips make me so body-conscious now. I feel like it’s all people see when they look at me.

I have yet to have surgery for my scoliosis, I’m 20 years old, i have 2 curvatures in my spine and all the doctors I’ve seen for my spine disregarded me getting any surgery, i sometimes wonder if i should’ve gotten it when i was younger, its been 3 years though since i had an X-ray of my spine. It was last a 34.2 and a 43.3 🥲 im rather terrified about the thought of getting surgery

The most random thing scoliosis has caused me is hearing loss. Caused by nerve compression along my spine. Ps. I also get those electric shock sensations and i tend to get those after a long day and it gets quite annoying and painful

Ho my friend. I too have scoliosis and I also has got a stomi and I got osteoporosis and I got suffering of autism too which I have done from my childhood. You are an exsample of that fighting is everything. I also have finished a marathon and several halfs too and now as 60 year young I am preparing to run yet a half marathon in october. But congratulation to you. Very very great run. Inga. DK . 😎

It's really painful

I am a moderate scoliosis patient. but since the past 6 months my bent spine often hurts and feels numb or like being pricked by a needle. and this pain is even worse if I rest and lie down followed by a constant stiffness and throbbing in the bone. is this a sign that my scoliosis is getting worse? I'm sorry for my bad english

Honestly these are good for those with scoliosis regardless of spinal fusion. I have all these items and they are extremely helpful. I have moderate Dextroscoliosis and also have to wear Braces on a part time basis. Another item I would suggest to people is a toilet aid. As embarrassing as it is, it's better than ruining your knickers because you couldn't quite reach to wipe yourself fully.

These tips are very helpful, thank you! The last one is so key i think💜

I have a 57 degree curve in the thoracic area.. They want to fuse from T2 - l1 I'm scared to get it.. But I want to feel good enough to be with someone..

I don't want to leave the house because of it.

You are Superwomen 💪

Hemiplegia

I am getting ready to have a spinal fusion of my entire back. I have a double curve too:( Thank you for your videos, it really helps knowing someone that had the same kind of surgery. You are so inspiring !!!❤

It is a while ago now but having a son who went through a major operation for Scoliosis and who has since managed a half I congratulate you on your achievement very well done!

Ive had 3 strong depression / panic attacks episodes in my life (currently living the third one) due to scoliosis. And my curves are 16.5 lumblar /11 thoracic, which I know are "mild"...my previous one was 7 yrs ago and lasted a few months. It all started by believing into CLEAR institute ad about their "intensive" program effectiveness. I went for 2.5 weeks to the US, buying return ticket from Europe, spent literally a fortune and after 2 days it was CLEAR to me to be bullshit. These guys prey on desperate people...I was at the hotel alone for 2 weeks with severe panic attacks, contemplating the worst options. I managed to get out of that one by finding exercise program I believed in and for the last 7 yrs it worked. However last 1/2 yr I noticed it has increased my muscle assymetry and I started feeling more pain in the neck and limits in my breath. I am currently looking for a path again, that I will believe in and again dont yet know what to do. Scoliosis is a hard life-time affliction:(

Loved it. Thank you for sharing.

Thank for your videos!!! It helps knowing someone that had the surgery. Magnesium glycinate powder has helped my anxiety, it is nearly gone.

i know a little bit of how you feel. 😢 it is a struggle.

Such amazing videos Louise, and great to relive this amazing adventure.

Thank you so much for your video. It helped a lot. I was diagonosed with scoliosis when I was 13. I have a very progressive one, a double like you. I am 63 now, with curves around 80 degrees. During my life, I asked for operations 8 times and it was always refused: too dangerous because of the double curve. So I adapted my life, had a house built (no stairs, high kitchen, walk-in shower, high toilet etc). Last year, during a 'normal' check-up, I got the offer to have an operation after all. In my case, it would mean fusion of my entire back, except for the neck. After having been refused 8 times, I am still not sure if fusion is worth the pain and all that, but I also know that my scoliosis will progress faster as I get older. My main problem is that I live alone, with a cat and a dog, in an area where health care is not great, to put it mildly. I have no idea what to do with my pets after surgery, how to get my daily things done, stuff like that. I will get professional help when I get out of the hospital, but after that, I have no idea. And I have no emotional support at all, as I am Dutch but live in France and have no family or friends here.I would have the surgery here in France. An added problem with me, although it could also offer some advantages, is that I have hypermobility. It means less support from my joints but more flexibility. I have no idea how that will work out. One thing I can advise you on: as far as the pain in your right leg is concerned: have them check you for lumbar stenosis (can easily be seen on an MRI but everyone is fixed on your scoliosis and/or checks for slipped disks). Stenosis is quite common with scoliosis, especially in older patients, and can be fixed or made more bearable in several ways, from exercises to surgery. I decided to ask a 2nd opinion before deciding on yes or no surgery, mainly because it has been refused so often. I know a lot of progress has been made since the first time I asked for surgery (that would have been around 1986, when you had to have traction before surgery and wear a plaster corset for 3 months) but before last year, I saw an orthopedic surgeon in 2016, specilalised in surgery with older patients and he too told me no, said the disadvantages of a stiff back from shoulders to butt were worse than the limited advantages in my case. Tnx again for your video, and also thx to the people who reacted. One thing is clear: surgery is not going to make me live a pain-free life. That sucks.

Such a beautiful presentation guys, so nicely presented! Place looks so exotic!!!

Happy you got my epic dance moves at 0:34 <3 Awesome trip, will remember it forever - such a beautiful place.

Asking you questions when you don't want to be asked questions is one of my new hobbies. You smashed it!

Kudos to you for enduring that long journey and especially the flight!

Wow thank you. I didn't know if the electric shock feelings were from my spine or not...

Hi can u do drive to car after surgery

Hi my name is pardeep I have fusion t4 to l2 I m 40 year, now I decided go to surgery. Where u did surgery . Nd dr name. Hopefully after surgery life is good . Please reply to me

'Promo SM'

I find that my biggest challenge is foot drop. I miss riding a bike even though some people do. I'm 3 years out. I garden and have changed my ways of doing a lot of things. This wouldn't be as bad if it wasn't for the foot drop.

Excellent video from you, however, your description of the Great North Run puts me off as a runner never to run it and just watch it on TV, I have only ran 1 half marathon locally but have ran 44/10Ks, 95 parkruns and 7/10 mile runs.

Excellent video Louise! 😃

I had spinal fusion surgery in January this year and I found this video super helpful. Thank you!

I had fusion in 2001 when I was 13, and nobody ever told me about the limitations or how it would impact my life. They basically just told me I’d move like everyone else once it was healed. I’ve had horrible pain ever since and only found out in 2020 it’s because of the excess movement/ wear & tear on the area AROUND the hardware . Finally got that addressed and my quality of life improved dramatically. Didn’t even realize I hinged from the hips to bend over- I never thought about how other people actually bent their bodies & just blamed myself for not having the same range of motion. The surgery saved my life, but I wish the education around it was better. Thank you for making videos like these bc I don’t trust that surgeons are fully communicating the ways the surgery actually affects patients- I’ve dealt with this for so many years and I still find it so helpful and comforting to see someone else whose mobility is almost exactly like mine! It can be very isolating, but this was like a nice, gentle hug ❤

Thank you for making these videos, I have a friend with scoliosis that made me seek them out. Now I can understand and nudge your knowledge their way to help them better themselves through life❤

I'm four years post scoliosis surgery and I feel you when you say you get leg pain

I was contemplating starting to make videos about my daily life with scoliosis.....and there you are! Thanks for this! gonna watch it now :)

Hi.Did you find throughout the years pre-surgery via x-rays that your scoliosis was worsening or did the doctors tell you it would worsen when you become older?

maam can I ask you a question? your scoliosis is not worsen if you running or jogging?

I don't understand meaning after you have held you still use all those items?

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