scoliosisstory I know I've been a little MIA for the past couple days.. So I wanted to update you all on my Appointments I went to! The post op with the neuro surgeon went great, he said everything looks really good! 🏻 I also had an appointment with my Ortho surgeon (my back dr)... We talked about my back pain, my curves, and what my back looks like... So my top curve isn't much of a problem, my pain, fatigue, and everything is a problem... So we have discussed doing yet another surgery... My first surgeon straightened my spine at an angle instead of centered with my body, so it's messing with my joints, muscles, and pain.. So the surgery, It will be an osteotomy on a few parts of my spine, they will take out pieces of bone, reset my spine, and put little rods in to hold it In place.. My dr wants me to think about it really hard, because it's an EXTREMELY hard surgery.. And recovery! But if I have a chance to improve my life I want to take it.. #scoliosis #severescoliosis #scoliosisstory #chronicpain #hope #strength 1d
  •   michellepress Im so sorry that you might have to deal with yet another surgery. You are such a strong person for never giving up hope despite all the pain and suffering you have been through and face each day. Hang in there, we are rooting for you!! 1d
  •   scoliosis.superhero Such a fighter! 1d
  •   marisagettas I had revision surgery last year, and one of the HUGE improvements is my spinal alignment. It's so much better now -- makes a huge difference in my physiotherapy, holding proper posture etc. before I was fighting against the alignment all the time (my muscles would seize/tire really easily) -- and since it was fused I couldn't do anything to change it. Recovery is ongoing, but I'm able to do things now I never dreamed possible. So for, big risk and it had a big reward! Hope that insight helps 🏼 #scolifam 1d
  •   no_fear_just_faith Love you so much 1d
  •   sapereirajoana You are a superhero! 17h

» LOG IN to write comment.

scoliosisstory Got all of my appointments taken care of yesterday, I will update about those later, as there is a lot to say! Anyways after my appointments yesterday I had the amazing opportunity of meeting Katy (@scoliosis.superhero ) She is such a sweet girl, and she is so tough!! 🏼 she hasn't had the easiest time with her hospital stay but she is such a fighter and I know she'll get through this! I got to sit with her in the ICU, I also got be there when she transferred out.. We talked for a couple hours about scoliosis, surgery, recovery, and Instagram and the awesome support it offers! She also has the sweetest family! Instagram is definitely an amazing thing, it's always nice to have support from people who know what it's like! 🏻#scoliosis #severescoliosis #scoliosisstory #hope #strength #congenitalscoliosis #scoliosisawareness #spinalfusion #hospital 6d

» LOG IN to write comment.

scoliosisstory Headed to my 1 month Post Op appointment with my neurosurgeon ... I also have an appointment with my orthopedic surgeon to discuss my back pain and top curve! Hoping to get some answers. Thank you all for your support through my journey! #scoliosis #severescoliosis #scoliosisstory #chronicpain #complexchiarimalformation #klippelfeilsyndrome #kfs #hope #strength 1w

» LOG IN to write comment.

scoliosisstory Everyone wish good luck to this tough girl who is going through her spinal fusion surgery tomorrow morning! 🏼@scoliosis.superhero We all know how hard scoliosis can be, but with support from tons of people it is possible to get through it!! #scoliosis #scoliosissurgery #spinalfusion #support #scoliosisstrong 2w

» LOG IN to write comment.

scoliosisstory Can I ask you all a HUGE favor? I've started a page to sell beanies... For every beanie purchased one will go to a Brave kid fighting an illness... I'd like to let as many people as I can know about this page... If you could repost and share what I'm doing it would help out a ton! Thank you all so much!! Love you all!! @BraveryBeanies #beanie #knitting #buyonegiveone #braverybeanies #sickkid #hospital #donating #illness #chronicillness #scoliosisstory #scoliosis 2w

» LOG IN to write comment.

scoliosisstory Yesterday I was officially one month post op from my chiari decompression surgery! I can't believe it's already been a month, still recovering, still some pain, but doing okay! I couldn't have done without all the amazing hospital staff, my mom, my best friend, and all of you guys! Thank you all from the bottom of my heart #chiarimalformation #complex #decompressionsurgery #hospital #onemonthpostop #strong #faith #hope 2w

» LOG IN to write comment.

scoliosisstory Pinterest Dates with the bestie are my fave 🏻️ Were both kind of going through a rough patch.. So cute quotes on Pinterest make things better!! Plus it's distracting me from the pain! hope you've all had a good day/night! #bestie #Pinterest #pain #scoliosis #scoliosissister #medicaltwin #quotes 2w

» LOG IN to write comment.

scoliosisstory Today was a long day... I woke up, ended up babysitting, which was fun but hard ... I thought I could just take ibuprofen and be ok 🏻 but that didn't work 🏻... I crashed after I finished babysitting 😴.. Plus my very best friend in the whole world 🌎 was hurting so bad today, I couldn't physically be there ️and no one was helping her..🏻it kills me when I know she's in so much pain and she has no one that will help her.. Guys, distance is so hard when it comes to a best friend! ️ Bre, I love you girl! #bestfriend #hardday #scoliosissister #longdistancebestfriends #medicaltwins #pain #hurt #sisters #loveyou #scoliosis 2w
  •   no_fear_just_faith I love you so much! Thank you for doing everything possible to make me feel better xoxo 2w

» LOG IN to write comment.

scoliosisstory "And I never know quite what to say when you're upset, and it tears me apart that I can't always help you. Just know that I am always here for you, and if you ever fall I will be here to catch you, and if you ever feel lonely at four in the morning, I'll be here to talk to you. Know that I am aware of all your pain, and all the sadness you have, and I'm willing to help you carry it. I love you, and it rips my heart apart to know you're not happy all the time." ️ I have the best friend in the whole world 🌎 and I couldn't ask for a better one from taking care of me, to always helping me, even while going through her own struggles. I don't know what I would do with out her ️ she is the STRONGEST girl I know, and I don't think she knows how much I completely appreciate her! #bestfriend #scoliosissister #medicaltwin #love #brave #strong #hardtimes #sticktogether #always 3w
  •   no_fear_just_faith I love you with my whole heart, Madi️ thank you so much for this post!! 3w

» LOG IN to write comment.

scoliosisstory Hey guys, @no_fear_just_faith here giving you all a little update on Madi. She has been fighting off the ER for the past few days but today she went in after she noticed blood coming from her ear. Luckily the blood turned out to be from a broken blood vessel & was unrelated to her surgery!🏻 They gave her Reglan and Benadryl and she was able to get more sleep than she has in the past 3 days She is back home now trying to take it easy & she was started on a new medication for her headaches which will hopefully help!!So glad you okay, Madi! I love you #bestfriend #scoliosissister #medicaltwin #er #headaches #chiarimalformation #chronicpain #myhero #inspiration #bebrave 3w

» LOG IN to write comment.

scoliosisstory Pain is real. But so is hope...️ The pain you experience is very real.. It's hard, it's hard constantly hurting, constantly having pain go through your body.. The pain may be real, but so is hope.. Hope that one day someone can help you, Hope that one day you won't hurt this bad, this much.. Hope that it will go away... Ill admit its hard holding onto hope when you've been in this much pain, for so long... But no matter what you're going through, please, never give up, never lose hope! ️ having a rather rough night but hoping it gets better .. #severescoliosis #scoliosisstory #chronicpain #complexchiarimalformation #decompressionsurgery #klippelfeilsyndrome #hope #pain 4w
  •   mustluvdawgs Ruff night, day, week&month here... So ready to feel normal again and not a body that is on fire with pain 4w
  •   sapereirajoana I'm having a rough night too. It's so hard. Pain 24/7. But that's our life and what is a life without hope? Nothing. So, I'm sending a lot of love and hope to all the fighters like us. 4w
  •   rebeccameijer Having a rough week with bad news, but I will never give up. Thank you for posting this 4w
  •   archery_shooter That was a wonderful speech and you inspire me hope is a wonderful thing to have and I am glad that you have it because with out it I don't what you would do and one more thing God is your hope he will never let you down he will be there to take away all your pain and stay thought it all 4w
  •   scoliosisstory @mustluvdawgs so sorry you are having a rough time, I'm always here if you need me ️ || @sapereirajoana So very true!! Thanks so much, you are so sweet!! ️ || @rebeccameijer so sorry to hear you are having a rough week... But I'm sure things will start to get better ️ || @archery_shooter Thank you so much for your sweet words and all of your support 3w
  •   scoliosisgirl111 Ur so right :/ 3w
  •   archery_shooter Hey I have a question have u ever had a LP 2w

» LOG IN to write comment.

scoliosisstory Hope you guys are having a great day! ️ Just wanted to give you a little update on me.. My headaches are getting better! It took a decompression and 2 rounds of steroids but I think we've got it under control! I have my one month post op appt on the 27th! My T-spine has been causing me a lot of pain, and before my decompression surgery my orthopedic surgeon discussed taking it one issue at a time because I'm so complex... So i guess T-spine is next on the list! Thank you for always supporting me #scoliosis #severescoliosis #scoliosisstory #chronicpain #complexchiarimalformation #decompression #klippelfeilsyndrome #kfs #hope #strength 4w

» LOG IN to write comment.

scoliosisstory This is my best friend.. On this day 3 years ago she had her first spinal fusion.. On this day 3 years ago her spine was straightened.. She thought she'd be pain free, that her life would take a turn.. That things that became difficult to her would soon come easy to her.. That when she woke up her pain wouldn't be there.. Unfortunately that didn't happen .. She lives with chronic pain everyday.. But not once has she ever regretted getting her fusion, it has changed her life tremendously.. The strength she has amazes me .. The will she has to endure her pain is amazing.. While her fusion came with complications, it also came with new life adventures.. I'm so proud of you Bre, spinal fusion isn't easy and you made it 3 years.. I love you so much ️ happy #spineaversary #bestfriend #spinesurgery #spinalfusion #loveyouB 4w

» LOG IN to write comment.

scoliosisstory Knitting and Netflix all day it's that after surgery life! I'm currently knitting beanies, and collecting toys for the children's hospital so I can deliver them when I go up for my 1 month post op appointment! ️ {My headaches have been really awful lately so my surgeon started me on another round of steroids to decrease pressure} #knitting #crafts #postsurgery #netflix #chiari #chiarimalformation #decompressionsurgery #headaches #strength #hope 1mon

» LOG IN to write comment.

scoliosisstory Found this picture and loved if, not just because of the puppy but the quote is totally accurate 🏼 it isn't easy living with a chronic illness, always be kind you never know what someone is going through #scoliosis #severescoliosis #scoliosisstory #chronicpain #complexchiarimalformation #klippelfeilsyndrome #kfs #hope #strength 1mon

» LOG IN to write comment.

scoliosisstory Just wanted to show you guys An updated picture of my scar! Having a rather hard day with pain today, I'm sure it's all part of recovery... Plus my back has been hurting from my #scoliosis so that is always fun... I wouldn't be getting through any of this right now if it wasn't for my #bestfriend @no_fear_just_faith... Anyways I hope you all Are doing well! #chiarimalformation #decompressionsurgery #recovery #hard #pain #scoliosis #scoliosisstory #surgery 1mon

» LOG IN to write comment.

scoliosisstory That Recovery life tho 🏼️.. Tears, pain, and sleepless nights.. it will all be worth it in the end.. #chiarimalformation #complex #surgery #decompressionsurgery #recovery #tears #pain #hope #faith 1mon

» LOG IN to write comment.

scoliosisstory Post surgery-Chopped my hair off 🏻 it was Driving me nuts, super heavy, and super itchy!! Sooo I got it cut... Doing okay, spending the day with my grandma... Still on round the clock pain meds but doing better! I sleep a lot! 😴 #surgery #chiarimalformation #decompressionsurgery #recovery #hope #pain #haircut #chiari 1mon

» LOG IN to write comment.

scoliosisstory {this was pre surgery} I couldn't be more grateful for this woman holding my hand... Through everything.. Setting alarms for 2,4,6 am just so I can have my round the clock meds... Wiping my tears, tickling my arm until I can fall asleep... Waking up to do silly things like turn on a movie for me... Being my nurse, mom, superhero through everything... I love her ever so much and could never thank her for all she does... #mom #nursemom #supermom #bestfriend #support #chiarimalformation #scoliosisstory #decompressionsurgery #recovery #surgery 1mon

» LOG IN to write comment.

scoliosisstory Well that's it folks, I'm outta here! Being discharged today! They will send me home on an assortment of medications, I will get my stitches removed Monday, and I'll most likely feel all back to normal in 2-4 weeks! This definitely was not an easy surgery, but with the support from my best friend, my mom, and all of you guys I was able to push through.. Thank you from the bottom of my heart!! #chiari #chiarimalformation #complex #decompression #decompressionsurgery #hope #faith #love 1mon

» LOG IN to write comment.