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 21h

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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 1d
  •   sara._.mari I'm thinking about doing it too when I get a spinal fusion looks good! 1d
  •   coachsaudi Cool! 1d

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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 4d

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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 5d

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scoliosisstory #nofilter pic of Madi's armsIt's Bre posting yet again! Madi is doing okay, She had a really bad morning with vomiting and headache pain...So they've started her on steroids that will hopefully control it! She is feeling a bit better and just had a bowl of fruit loops! Woo hoo hopefully she will be released tomorrow!! #chiarimalformation #chiarisurgery #decompressionsurgery #strong #fighter #inspiration #bruises #IVarms #ouchie 6d
  •   marisagettas I take it those bruises are why her IV was in her foot? Looks like they blew a couple of veins out with the IV -- that always sucks. Glad to hear that she's eating 🏼 6d
  •   scoliosisstory @marisagettas yes-that is why I had them in my feet thank you for your endless support on my journey 2d
  •   marisagettas You are most welcome my dear :) If we stick together we'll get through the world with a smile 🏼 2d

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scoliosisstory @no_fear_just_faith updating again Here is a picture of her incision! It's looking amazing!! Today is going to be a transition day for her so they will be switching her from IV meds to oral meds🏻So she will be getting discharged tomorrow or if not, then definitely Saturday! She is eating and walking which is great & she got a visit from the most adorable pet therapy dog Thank you guys for all of your sweet comments, I know Madi has appreciated themSo proud of you Madi!!🏻 #chiarimalformation #decompression #postopday3 #healing #fighter #strong #inspiration 1w

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scoliosisstory @no_fear_just_faith here again posting for Madi! She is doing so well and I am SO proud of her! Today Her pain has been painful/throbbing headache, and she had nausea this morning but they got that controlled🏻she is going to be on around the clock narcotics til tomorrow sometime. She has been sleeping a lot today but has gotten up to walk to the bathroom and back a couple times today and has also been sitting up!🏻 She got this beautiful blanket (lower pic) and a bunch of other goodies from the hospital️I can see the old Madi coming back around and I love it! Can't wait until she is totally healed!! #chiarimalformation #chiari #decompressionsurgery #postopday1 #strong #fighter #bestfriend 1w
  •   tn_pooh God bless her. 😇 1w
  •   marisagettas Is that her IV in her foot? So glad they got the nausea under control and that she's sleeping -- it's truly the best medicine 🏼 1w
  •   scoliosisstory @marisagettas yes it is 1w

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scoliosisstory It's Bre, @no_fear_just_faith with another Madi updateshe is doing well, she is on morphine and Valium which don't seem to be helping a ton but she says it is definitely taking the edge off from the headache/pain which is amazing! She has already been up to walk to the bathroom and has been able to eat which are both great signs🏻 I've seen her incision and it looks fabulous🏼 I will post more updates tomorrow when I hear from her again! She says to thank you all for your support #scoliosissurgery #recoveryday1 #surgeryday #chiarimalformation #complexscoliosis #inspiration #fighter 1w

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scoliosisstory Hi everyone, it's @no_fear_just_faith updating for Madi️ she has her decompression surgery this morning and is now out of surgery!! Her mom has been giving me updates from the doctors. The surgery went well and her surgeon was able to clear a good amount of space which is great. She is now in recovery, nauseous and in pain but she is doing well. Thank you all for your prayers and good thoughts! I know Madi really appreciates each and every one of you! I will continue to update you guys until Madi is back to feeling good enough! #chiarimalformation #surgeryday #prayforMadi #support #nofearjustfaith 1w

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scoliosisstory Went and got blood work done! 🏻 at 1am T-7 hours until I have to be to the hospital... Getting anxious! haven't slept in a couple of nights, but I'll be doing plenty of that the next few weeks so it's okay 😴 #chiarimalformation #chiarimalformationsurgery #decompressionsurgery #brainsurgery #surgery #hospital 2w

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scoliosisstory Really tho.. They are! ️ when scheduling a surgery it doesn't start to feel "real" until you get the call about the exact time you need to be there.. I will be to the hospital at 9:30 am.. Surgery will start at 11:00am Monday morning and should last about 2 1/2 hours... Yes I'm nervous, I'm anxious, but I know I can do this... Thank you all for your support #chiarimalformation #chiaridecompressionsurgery #surgery #brainsurgery #hope #recovery #hospital 2w

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scoliosisstory Absolutely true! ️ sorry I haven't posted in almost a week!! I've been busy getting ready for my brain surgery on Monday if any of you have had surgery you know how much work it takes to get ready.. the whole concept of "brain" surgery kinda freaks me out, but I'm not too nervous because I have a wonderful support system who I know will get me through this! My amazing best friend who is all the way in California will be keeping in touch with my mom plus facetiming me everyday, multiple times a day. I have full confidence in my surgeon and am really hoping that this relieves a lot of pain... It won't be easy but it will be worth it! #chiarimalformation #chiarimalformationsurgery #decompressionsurgery #strength #surgery #nervous #hard #worthit #hope 2w

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scoliosisstory Today was the day of my appointment with the complex spine clinic... Thank you to all who supported me and prayed for me today! The prayers worked ️ I felt the love... I am having my chiari decompressed on July 20th so I only have 10 days til surgery... With the anatomy of my skull the have to do it a little bit different then most! But it is going to be a 2hr surgery, 4 days in the hospital, and 4 weeks recovering... Lots of pain, but in the long run this should definitely improve my headaches... I am so blessed to have an amazing team of Drs who help me through Everything life throws at me! #scoliosis #severescoliosis #scoliosisstory #chronicpain #complexchiarimalformation #klippelfeilsyndrome #kfs #hope #strength 3w

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scoliosisstory Probably one of the biggest things my best friend does for me... She believes in me even though I don't believe in myself most of the time... When I get down, when I tell her "I just can't do it anymore" she's always there to pick me up, dust me off, and tell me that I can.. That she believes without a doubt that I can! I love her with my whole heart and don't know what i would do without her! #bestfriends #scoliosis #scoliosissister #medicaltwin #encouragement #love #klippelfeilsyndrome #complex #chiarimalformation 3w

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scoliosisstory In hopes of raising more awareness for Klippel feil syndrome I have gathered info and created this post Klippel-Feil syndrome (KFS) is a rare skeletal disorder primarily characterized by abnormal fusion of two or more vertebrae within the neck. Only 1 in 40,000 are diagnosed with this disease. Some may also have an abnormally short neck, restricted movement of the head and neck, and a low hairline at the back of the head. The disorder is congenital, but some may go undiagnosed until later during life when symptoms worsen or first become apparent. In some, KFS can be associated with additional symptoms and physical abnormalities. These may include scoliosis and/or vertebral instability, a portion of the spinal cord may be exposed due to incomplete closure of certain vertebrae (spina bifida occulta), may be associated with incomplete development of one half of certain vertebrae (hemivertebrae) and fusion of the first vertebra of the neck (atlas) with the bone at the back of the skull (occipital bone), plus more.. People with KFS are more vulnerable to spinal cord injury because of instability in the neck.
#klippelfeilsyndrome #awarenessiskey #KFS #awareness #hope #faith #pain #raredisease #rarediseaseawareness {feel free to repost}
4w

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scoliosisstory Happy Independence Day to my followers in the U.S. So blessed to live in a country that is free! I could never fully thank the brave men and women who sacrificed their lives to protect our freedom! Hope you have a fun a safe Fourth of July! Love you all! #4thofjuly #independenceday #scoliosisstory #scoliosis #patriotic {fake tattoo says courage} 4w
  •   mickeyann You should get that tattooed there!! Everyone jokes about my scar and says I should put dotted lines with little scissors that says "cut here" 4w

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scoliosisstory I cannot imagine my life without my best friend! I love you so much girl! 👭️ thank you for helping me through these long nights! #insomnia #chronicillness #chronicpain #scoliosisstory #bestfriend #sister 4w

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scoliosisstory Sorry I haven't posted in a while, I've been having an extremely hard time with my pain... But here is part of a blog post I just wrote, link is in my bio if you want to read the whole thing it's called "Save me" #scoliosis #severescoliosis #scoliosisstory #chronicpain #complexchiarimalformation #klippelfeilsyndrome #kfs #hope #strength 4w
  •   alexlovesx33 Aww️ if you need anyone text me! 4w
  •   scoliosisstory @dmplz72 yes I believe in God and Jesus.. It just gets hard sometimes! 4w
  •   scoliosisstory @alexlovesx33 I will for sure! Thank you 4w
  •   alexlovesx33 I'm sorry I haven't been talking to many people! I apologize with being in & out the hospital lately I just feel like I miss all my Instagram friends lol4w
  •   dmplz72 okay. 4w
  •   scoliosisstory @alexlovesx33 no need to apologize! Ive missed you 4w
  •   innakoreyko I also have scoliosis, and I had surgery 1,5 years ago, and it was like hell of course, and I still have pain rather often, because my lumbar remained curved, surgery didnt make me 100% straight, and also my chest with screws is paining sometimes. But I keep on living, fighting, and I tell muself: things can be worse. Each time when I hear about for example plane crash with 100-150 victims I tell myself: "those poor people had straight spines, they didnt suffer any daily pain, but look what suddenly happened to them, they are gone. My life is not easy, but I am alive". That's how I help myself to cope with all this. Stay strong! 4w
  •   marisagettas Print off your blog post and show it to your doctors hon 4w

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scoliosisstory My beautiful best friend is trying to spread more awareness for scoliosis before the month is over! 🏼 if you go to her page @no_fear_just_faith the link to her YouTube channel is in her bio! She has a video of a bunch of scoliosis fighters, and a video of her personal experience after her first fusion! We NEED more awareness for scoliosis it affects WAY more people than we think it does... It's not just a crooked spine, it is physically and mentally draining for some people! Please share this with anyone and everyone! Link in her bio #scoliosis #scoliosisawarenessmonth #scoliosisawareness #severescoliosis #congenitalscoliosis #youtube #awareness 1mon

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scoliosisstory New post up on the blog ️ to read the rest of this post the link is in my bio.. And the post is titled "I am Blessed.." It would mean a lot if you could check it out ️ {medicallycomplexandhopeful.blogspot.com} #scoliosis #severescoliosis #scoliosisstory #chronicpain #chiarimalformation #complexchiarimalformation #klippelfeilsyndrome #kfs #hope #strength #blog #blogger checkout my last post for #scoliosisawareness 1mon

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