scoliosisstory I still can't believe this is happening.. I've known this girl for a little over a year she's been my best friend, -and biggest supporter.. I can guarantee My life would be completely different had I never met her. Even when she is having a rough day she still makes sure I'm okay, still helps me through my pain. She reminds me daily to have faith in all the things I'm going through.. I never thought the day would come that I actually got to hug her and hang out with her In person.. It's almost like we've known each other forever! I finally got to meet My BEST friend.. My medical twin.. My Person! I love you so much!! @no_fear_just_faith #medicaltwins #scoliosissister #bestfriend #meetup #scoliosis 7h

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scoliosisstory Wanted to show you guys what my head looks like when I'm relaxed, not really trying to hold it. and when I'm using muscles to hold it up.. Thanks to Klippel-Feil syndrome and my Complex-Chiari malformation! #scoliosis #scoliosissurgery #severescoliosis #scoliosisstory #spinalfusion #chronicpain #complexchiarimalformation #klippelfeilsyndrome 4d
  •   flowingcreek I'm getting surgery for scoliosis 4d
  •   thescoliosislife Sorry for tagging you under that post I'm trying to win a contest and had to tag 3 people I put the first three accounts that came up(: 2d

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scoliosisstory I have got a disease no one can see, the way I feel it will be the end of me. You do not look hurt is what they say but I would like them to be me just for one day. ️ "Normal" people or a person with perfect health, could not fathom how hard it is for most of us to look like we're okay, to look like it doesn't hurt to sit through class. Or to take care of our daily responsibilities. To appear as if we, too have perfect health. {never judge a person on what you see, because in all honesty were all struggling, some people are just better at hiding it than others.} #scoliosis #scoliosissurgery #severescoliosis #scoliosisstory #spinalfusion #chronicpain #complexchiarimalformation #klippelfeilsyndrome 5d
  •   ripbutterflycourtney Yaaaas stay strong girl. Love you! 5d
  •   inspirationaladvocate I'm always here. 5d
  •   thekneegirl Yes yes yes. gotta just keep pushing through it. that's all we can do. always here if you wanna talk.5d
  •   emilys_22 Yes. People can be quick to judge and they really don't understand what we have to go through. And I know it's hard not to think that you aren't normal, but you are. I'm always here if you ever need to talk 5d
  •   theskinnyfit Nice! :-) 5d
  •   juli.olcelli This make me cry too. We live in a constant fight with our own bodys .. but try to think one time for day : some day the pain will gone :))) dont know you, but I have two surgery for scoliosis, I understand the pain .. 4d
  •   no_fear_just_faith Im at the airport! 1d

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scoliosisstory My #jeansforgenes, I wore today in honor of everybody who has a rare disease! I suffer from Klippel Feil Syndrome, which is when two or more of the vertebrae in your neck are naturally fused at birth, causing a short neck and low hairline. #thathairlinethough . I also suffer from a Complex Chiari Malformatjon, it's when your skull doesn't form properly, mine is causing a fluid leak and pushing on my spinal cord. My brain doesn't have enough room, because my skull is too small. I will need surgery to fix all of these deformities. I suffer from a Severe case of scoliosis, with a curve in my shoulders, neck, and lumbar spine. I've had 4 surgeries to correct it, but as you can see I am still pretty crooked. I live with chronic pain everyday.. {Be Kind for everyone you meet is fighting a battle you know nothing about} #scoliosis #scoliosissurgery #severescoliosis #scoliosisstory #spinalfusion #chronicpain #complexchiarimalformation #klippelfeilsyndrome 5d

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scoliosisstory Today is Rare disease Day! I personally have Congenital Severe scoliosis, Complex-Chiari Malformation, and Klippel-Feil Syndrome. I have met So many wonderful people on Instagram who suffer from rare diseases also so in honor of all of them.. #wearthatyoucare today! #scoliosis #scoliosissurgery #severescoliosis #scoliosisstory #spinalfusion #chronicpain #complexchiarimalformation #klippelfeilsyndrome 6d

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scoliosisstory {Giving up is the easiest thing you could ever do, but holding it all together when everyone expects you to crumble that is true strength} #scoliosis #scoliosissurgery #spinesurgery #back #curved #severescoliosis #scoliosisstory #spinalfusion #chronicpain #complexchiarimalformation #klippelfeilsyndrome 1w

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scoliosisstory Off to see the Wizard, the wonderful Wizard of Oz. JK im off to see my physical therapist, kinda the same thing though! I really hope my massage today will offer some kind of relief! ️ hope you all have a good day! #scoliosis #scoliosissurgery #spinesurgery #back #curved #severescoliosis #scoliosisstory #spinalfusion #chronicpain #complexchiarimalformation #klippelfeilsyndrome 1w

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scoliosisstory "Many people expend tremendous energy to hide their pain, poor health or problems, just to function in the world. Be kind, we're all fighting some kind of battle." #scoliosis #scoliosissurgery #spinesurgery #back #curved #severescoliosis #scoliosisstory #spinalfusion #chronicpain #complexchiarimalformation #klippelfeilsyndrome 1w
  •   shoshini Yep. 1w
  •   no_fear_just_faith So perfect for tonight! 1w
  •   sierradawnvail Hi, I was wondering if you would be able to answer some questions that I have. I will be receiving the surgery in April, and I still have so many questions about it. You can dm me or I can dm you mg email address 1w
  •   scoliosisstory You can DM me! :) @sierradawnvail 1w

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scoliosisstory {Where there is no Struggle there is no Strength...} ️ My pain is bad tonight, but hopefully it gets better! I hope you're all doing well! #scoliosis #scoliosissurgery #spinesurgery #back #curved #severescoliosis #scoliosisstory #spinalfusion #chronicpain #complexchiarimalformation #klippelfeilsyndrome 1w

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scoliosisstory "The rain will stop, the night will end, the hurt will fade. Hope is never so lost that it can't be found.." -Mandy Hale ️ I love this quote so much, it seems like nights are worse as far as pain goes! But eventually the night ends and a new day begins. #scoliosis #scoliosissurgery #spinesurgery #back #curved #severescoliosis #scoliosisstory #spinalfusion #chronicpain #complexchiarimalformation #klippelfeilsyndrome 2w

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scoliosisstory ~My strength did not come from lifting weights. My strength came from lifting myself up when I was knocked down.~ ️ My headaches, that are caused by my #complexchiarimalformation #klippelfeilsyndrome and #fluidleak from my brain stem, they are really starting to get worse and worse.. Hopefully my Percocet will let me get some rest tonight. #scoliosis #scoliosissurgery #spinesurgery #back #curved #severescoliosis #scoliosisstory #spinalfusion 2w

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scoliosisstory {Dear Best Friend, I honestly don't know what I would do without you!} ️ I basically have the Best Best friend in the whole world I don't know where I would be without her! I honestly cannot thank her enough for everything she does for me! #scoliosis #scoliosissurgery #spinesurgery #back #curved #severescoliosis #scoliosisstory #spinalfusion #chronicpain #complexchiarimalformation #klippelfeilsyndrome 2w

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scoliosisstory I have found that taking a step back from my tough situation and looking for at least one good thing always helps me! {I hope you all are doing well, if you ever need anything I'm here.} #scoliosis #scoliosissurgery #spinesurgery #severescoliosis #scoliosisstory #spinalfusion #klippelfeilsyndrome #complexchiarimalformation 2w

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scoliosisstory This was from one of my doctors appointments last week.. "If my spine looked like this I wouldn't be here ;)" I'm lucky to have the life I do though, my health may not be the best but it is better than most, my situation may not be ideal but at least I am still here.. A lot of kids don't even get to live to see 17.. There is always something positive in every rough situation if you look for it! #scoliosis #scoliosissurgery #spinesurgery #back #curved #severescoliosis #scoliosisstory #spinalfusion #chronicpain
#klippelfeilsyndrome #complexchiarimalformation
2w
  •   skellington.girl.1221 U have inspired me so much and I love you so much. Never forget to stay strong and we are ur scoliosis family kik me at invader_zim_1221 you are the sweetest person I know and u are so amazing and it would mean the world to me if you reply but if you don't have the time I understand 2w
  •   no_fear_just_faith Now you got iti love you so much! Keep inspiring & never lose hope! 2w
  •   kalena.the.queen You're so amazing 2w
  •   scoliosisstory @_maren_cooper @lil.tigger.girl @kalena.the.queen thank you all so so much!! Your support means the world to me! 2w
  •   scoliosisstory @no_fear_just_faith You're the one who inspires me to look on the brighter side of things! I love you! 2w
  •   dgbellababy123 Wow you are so positive. That's the way I look at my situation. After 4 surgeries back surgeries for scoli and 2 hip surgeries and more back surgeries I'm facing...and a total hip replacement at 29 eventually ..i always try and find thr silver lining. My health isn't the best either and doctors have told me that I to have a very challenging case.... I also have lupus and rheumatoid arthritis...but I'm alive and I can still walk and i know things can be alot woese for me. My dad has cancer and is in hospice so im thankfuk to be alive too. I have a 4 year old that depends on me too so I wake up every day and get out of bed for him..even though the pain is so unreal some days. You have to the play the cards you are dealt in life and play them well...because nobody every promised life would be easy...they just said it would be worth it. God bless you hunny.. big hugs go out to you and your strength to keep going. 2w
  •   scoliosisstory Thank you so much for your sweet, sweet comment! It makes me sad to hear everything you have to go through, I am so sorry about your dad! Hugs to you too @dgbellababy123 2w
  •   skellington.girl.1221 Welcome 2w

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scoliosisstory This is what Klippel Feil syndrome looks like.. There are much worse cases than mine, but you can see that my neck is really short, and my hair line is really low. {I've been debating cutting my hair off to ease some pain in my neck.. Don't know If I should.} 😬#klippelfeilsyndrome #complexchiarimalformation #scoliosis #scoliosissurgery #spinesurgery #back #curved #severescoliosis #scoliosisstory #spinalfusion #chronicpain 2w

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scoliosisstory Keep the faith.
The most amazing things in life tend to happen right at the moment you're about to give up hope! #scoliosis #scoliosissurgery #spinesurgery #back #curved #severescoliosis #scoliosisstory #spinalfusion #chronicpain #complexchiarimalformation #klippelfeilsyndrome
2w

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scoliosisstory Only 1 in 42,000 people have Klippel-Feil syndrome.. It is very rare! This rare disease occurs when 2 or more of the 7 vertebrae in your neck are fused together "naturally".. Your neck appears really short.. I was born with 3 out of 7 vertebrae in my neck fused.. I have a very complex case but I know my doctors are going to help me the best they can.. This situation is tough for everyone involved! #scoliosis #scoliosissurgery #spinesurgery #back #curved #severescoliosis #scoliosisstory #spinalfusion #chronicpain #klippelfeilsyndrome #complexchiarimalformation 2w

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scoliosisstory L️VE this quote! I hope you all had a good valentines day! I love you all so much! Remember you are more beautiful than you know, smarter than you think, and more loved than you could ever imagine! {look at my previous post if you want to read my most recent Medical update} #scoliosis #scoliosissurgery #spinesurgery #back #curved #severescoliosis #scoliosisstory #spinalfusion #chronicpain #klippelfeilsyndrome #complexchiarimalformation 3w

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scoliosisstory So I went to my appointments on Thursday.. They went okay! I found out I have a few more things than I thought! I went to my orthopedic surgeon first, he said I'm looking really good, he gave me a hug and told me that I'm doing great with everything I'm dealing with. He also works really closely with my new neurosurgeon and told me that I need to have faith in everything he tells me because he is the best of the best! So I went to my neurosurgeon and he told me that I have a very complex case, that it's been hard for him to figure me out! I have what he's calling a Complex-Chiari malformation, I also have Klippel-Feil syndrome only 1 in 42,000 people are born with it, my skull is very deformed, C1 is being pushed to the side, C2,3, and 4 are naturally fused together.. I have a little bit of fluid on my T-spine nothing they are too concerned about right now tho! We are going to wait 3-6 months and see what happens, the surgery they would have to do to correct all of these problems is very difficult, so we don't want to do it unless absolutely necessary.. I got 7 Trigger point injections, those were very painful and they seemed to have caused a lot more pain than take it away, but hopefully it starts to feel better.. I sort of had a break down but my neurosurgeon told me he could understand why I would be so frustrated, I've been through so much and still have so much to deal with but he is going to do what is very best for me and help me through all of it! 3w

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