Living with EDS: My Spinal Fusion Story | What They Don't Tell You + Answering Questions

Hello everyone! Hoping everyone is staying safe and healthy! As many of you may know, I live with a chronic condition, Ehlers Danlos Syndrome, that caused my spine to become very unstable. Because of this instability we were left with no choice but to fuse my spine. I have no regrets on that front, but let me tell ya, there is a lot that they don’t tell you ahead of time. You have to become your own best advocate, and a lot of that is just knowing the right questions to ask.
Spinal Instability in EDS: • Living with EDS: Spina...
My Diagnosis Story: • Living with EDS: My Jo...
My Jugular Stenting: • Living with EDS: My Ju...
All About my Feeding Tube: • Living with EDS: All a...
What my Feeding Tube Looks Like/How it Works: • What My Feeding Tube L...
Chiari and Tethered Cord: • Living with EDS: Chiar...
POTS/ Dysautonomia: • Living with EDS: POTS ...
My Embr Wave Heating/Cooling Bracelet: embrlabs.com/?...
Where to find me:
My Instagram: @watercolor_me_impressed / watercolor_me_impressed
My Etsy Shop: www.etsy.com/shop/ChristinaPa...
My Teespring: teespring.com/stores/christin...
My Medical Facebook: LoveOnChrist...
My Personal Facebook: / christina.doherty.315
My Twitter: C_DohertyPaints?l...
My Email: [e-mail]
My Silver Ring Splints:www.silverringsplint.com/

[@raylanier4519]

I keep coming back to check on you. Hope you’re doing well.

[@Arycke]

She just posted on Instagram (link on her channel) she seems okay!

[@chuckthebrindlepittie6820]

@@Arycke Those are just copies of previous Instagram posts. Not new material. I am not comforted by it -- at all.

[@kristi.kervin]

Same same! Always Hoping she’s doing well!

[@Junes.dreams.uk_]

No news of you, hope you’ll come back around here one day. Loved your videos.

[@Arycke]

She just posted on Instagram (link on her channel) she seems okay!

[@sl4983]

​@@AryckeNot buying it. Why would she just stop posting here

[@MayimHastings]

I had to stop this when you said you think you’ve been a bad example. Dear God, what you have gone through and are going through, and you’ve only ever encouraged us and championed for us and shown us just what you are made of. I will forever be grateful to you, Christina! I’m 35 y/o and have the skeleton of Yoda from having had psoriatic arthritis from the age of 6. There is no where to turn for help for me. I’ve been so alone in my guilt for burdening my family, terror of surgery, and everything else you’ve spoken about. You have helped me with all of that more than I can ever tell you! And btw, I wear the scarab beetle bracelet you made every time I leave the house because it gives me courage. I will forever be a Christina Doherty stan. 🙏😘💨

[@MandieZangora]

Tay Katoo YES!!!!! I second (or 15) this so much!!! (Also the skeleton of Yoda has me 🤣)

[@sarahwithstars]

Holy moly i feel this reply completely. Every part of it. Tay, I love and feel you, girl. You put it so well. I'm holding your hand on your journey too and we can cheerlead+ stan Christina together!! Xxxx

[@KimKozak]

Yeah... I thought the same thing whenever she said a bad example. but then I also thought seriously Christina you know that you can't be a bad example. because in order for something to be a bad example you have to have something to compare it against that is a universally-accepted good example. All of us are just absolutely thrown to the wayside to doctor ourselves and use the crapshoot advice a real doctors to do that. There are no examples to compare to.

[@williammurgida7521]

Guys try praying .. seriously, Jesus loves us . Its the next life which is eternal.

[@MayimHastings]

William Murgida I really hope you don’t mean that that’s our problem, that we don’t pray enough. I’ve been faithful and prayerful my whole life. What does that have to do with this? Being in pain and suffering has nothing to do with how much I pray. Again, I really hope I am misinterpreting what you said. Myself, and people I know have been treated terribly by the baptist church and told that I wouldn’t be having pain if I “truly had faith” and that I must be committing grave sins for this to be happening to me. When I was 6 years old. THAT IS VILE, and anyone who says that should be terrified for their own souls and begging for forgiveness! And if that isn’t what you meant, it’s just kind of rude to assume someone’s faith anyway.

[@mumijevi]

My story is nowhere as traumatic as yours, but I have had a slipped L4 disc that doctors kept brushing off as sciatica for nearly 10 months. Screaming, agony, I couldn't walk, stand, I had to be carried around the house and at one moment I couldn't pee from how much pain I was in. I ended up in hospital and they experimented on me for a month, not one person thinking I had a slipped disc because they thought young people can't get that AND that I was just being dramatic. They actually got me a psychiatrist because they were convinced I was making it all up. They also made me addicted to pain meds, like literal physical addiction. My parents ended up finding a neurosurgeon who rushed me into surgery. When you talked about the moment when you woke up and the pain was gone, and how walking felt so amazing I was in tears because that's exactly how I felt. I had to learn to walk again and have some symptoms to this day...but I CAN walk! Sending much love and support to you

[@mumijevi]

@@zeynand4039 Thank you, I am doing much better! ❤️

[@MyCrazyLife777]

Really miss seeing you on KZbin, hope you decide to come back and start posting again❤

[@mariepark4250]

This is a great video. I just want to add my experience. A surgeon, with absolutely the worst bedside manner saved my life because he is brilliant! Some high level surgeons don’t spend their free time learning social skills but they research and learn as much as they can to help people, They truly dedicate their lives to their profession. They are exceptional beings. The doctor I am referring to was known for having the worst.personality but staff and nurses held him in high regard because of his ability to change people’s lives. Bedside manner does not matter when a surgeon has magical hands. Thank you. I hope you are doing well.

[@An__-]

It has been quite a while since this video was posted and I'm hoping that you've just been busy living life and not that you've been unwell.

[@dont_harsh_my_mellow]

You can follow her Instagram: watercolor_me_impressed

[@kengray1291]

How do I follow you on Instagram?Are there other ways to reach you? I,m Lisa G and have EDSh and mastocytosis reactive disorder, gastro issues swallowing issues, spinal instability & all my joints dislocate.

[@andreahultman8272]

I’m with you: an EDS-literate neurosurgeon is a minimum requirement.

[@pkendlers]

You are one of the strongest person I know, Christina. And you've done nothing wrong. Sometimes circumstances are beyond us.

[@williammurgida7521]

Totally agree with this comment Cheryl. Why is it good people suffer?

[@johnnyrodriguez276]

@@williammurgida7521 This is true i have always said good people die early then a few years later I get setup at work by managers and coworkers this work injury messed me up really bad chiros and pts just want drain my hard earned money saying my case is nothing and can get my life back not true i will need surgery I think because it hurts so bad it gives me headaches i cant work i cant do anything im going to die soon young

[@williammurgida7521]

@@johnnyrodriguez276 bro check out on you tube faith for miracles by Duane sheriff its amazing and gives us hope in miracles

[@ReineDeLaSeine14]

I’m going to be real with you…Many of the people who’ve had surgery 10 years ago have wound up multiple surgeries in or are dead. Before you had begun your journey, the first EDS surgeons did go from skull to C7. People with those early surgeries have an odd angle to their fusion. I’m glad it turned out a lot of my problems were autoimmune because I’ve been diagnosed for 15 years and still have never had a fusion despite significant disc disease and stenosis. My mom and I met your surgeon…she wouldn’t let me see him. I’m thankful for that too.

[@KimKozak]

Without your videos I would be half spinally fused from continual proprioceptive degradation. I cite your situation with all my neurosurgeons and frankly every doctor. Your channel is the best EDS channel there is. Without your story I would have made TERRIBLE decisions earlier this year.

[@marilumendoza7038]

There's something about your voice that calms me down when I am having a anxiety feeling coming. Immediately I look for your channel and listen to you and I start feeling better Immediately....so I am thankful to you

[@indigothenanu8041]

I clicked because I found out I have spina bifida today after 28 years of having no clue, I keep getting really lucky despite everything. I'm glad you're able to have your own normalcy and keep smiling!

[@kellymyers7506]

When I was newly diagnosed with EDS,POTS,Spinal instability and seizures. You had two videos at the time when I started watching your channel! Over the years I’ve learned so much from your helpful tips and tricks and learning how to speak up for my self when I’m not getting the proper care/treatment I’m needing! I also want to thank you for sharing your life with us! You are amazing!Zebra Strong!!!!

[@raylanier4519]

Please do another video and let us know you’re ok.🙂

[@KittyCatCarrie]

I'm so happy to see you up and around again.

[@MyAsteriskLife]

Glad to see you making video again! Love from the hanclan!

[@libbygibson5612]

So glad you are back. You have been missed.❤️

[@EleanorNicBhatair]

Your strength is so amazing Christina, keep on fighting your journey ❤

[@annaWdbn]

Thank you for sharing that story. You are so strong!

[@decadentnight]

Great to see you here Christina, love you girl stay safe! 💕

[@kbellmurray]

Your strength is helping me find my own right now ❤️

[@chemicalbreath]

I miss your videos. Crazy beyond beautiful. Prayers.

[@BNHAalltheway]

Glad You are doing well glad You are back and posting again God Bless

[@penelopepolinsneemeyer4757]

Hi Christina! It’s lovely to see you looking so well xxxxxxxxx

[@laurenragle5228]

Unfortunately, it looks like I might be headed down the spinal path. We've known for years that my lumbar is highly unstable and I have scoliosis there. Thank you for this video. I find it highly insightful. As you said, surgery is not a cure, it's a treatment. I've had 5 surgeries on my knees - and the surgeon who did the first 4 is not EDS literate. Now that I have my EDS diagnosis, seeking out surgeons who know what they're doing is SO important. My last knee surgery was SO smooth because he understands EDS.

[@eugenegarrett1156]

This information is SO helpful for us as we are making decisions!

[@kathyannknight9661]

I miss you. This is hard But please come back make More videos

[@LetsTalkIBD]

You are glowing! What a champion ♡

[@karenmontserrat4201]

Hermosa!!! We missed you 🌼 hope Lauren and your parents are doing well

[@nancymandle5215]

it is just so nice to see you - i’ve been following you for years, and so appreciate your efforts to update us periodically. We all care so much about you and hope for improved quality of life for you.

[@juliacoulthard2380]

Thanks for being you! I hope you are doing amazing! It makes a world of difference to hear other people go through similar things.

[@aliciachristopher6506]

I'm so glad to know that Christina is well during this pandemic.

[@cmega1]

just stumbled across this channel by chance....your positive energy shines bright through my screen and pierces my heart. i see that this is your last upload so all i can say is i hope you are well and hopefully will see more content. your an amazing person and i hope to see you soon

[@pennysue8849]

It's been so long hope you are doing well. You are an amazingly strong young lady

[@crowtreasure2127]

I've followed you for a while now Christina, and you're my guiding light. You are an angel!

[@loiscassels8966]

Soooo glad to see you back, Christina! I’ve missed you. Nice to see you looking so well. You are beautiful and strong.

[@zdislavasviderova3685]

You are just such a sweet woman

[@danyella1579]

Girl you are so freaking strong. I have followed your journey through the years and you've been nothing but an inspiration and you've done so much for others by sharing your story and giving your perspective.

[@maryharte2551]

You are an inspiration to a lot of people well done you for keeping going and never giving up ❤️

[@thewoman2blame706]

Looking so good hun. Nice to see you posting 🖤

[@kerrysmiles]

This is great. Thanks so much for your openness. You've literally saved my life. I'm glad there were videos when I needed them. I'm sorry you didn't have them ❤️❤️

[@kbellmurray]

I’m so glad to hear you’re playing music still! I’ve been trying to figure that out again. I used to play guitar but it’s too much strain now and my arms are quite numb.

[@WinchestGold]

I can't thank you enough for making these videos. They help me to make informed decisions in my medical care. Hearing someone's real story helps me get a realistic picture of the possibilities.

[@MandieZangora]

Seeing this video in my subscriptions made my day ♥️ I’ve missed you!!!! ETA: I need a video of you playing the uke like a badass as soon as possible 🤟🏻😘♥️

[@NorseButterfly]

You are not a bad example! You are an example of information! If it weren't for you, I wouldn't have been able to learn how to advocate for myself. Because of you, I fought to get genetic testing to rule out vascular EDS and classical EDS, which it did! I just got my results yesterday...I also have my original dx of hypermobile EDS confirmed by the genetic counselor. She was amazing during my appointment last month. After a physical exam and going over my medical and family history, she agreed with the dx by my old rheum of hEDS. Without your knowledge on advocating for oneself, I never would have been able to get that appointment. I'll be 50 years old in October. 💜🤟🦓💪

[@christinadoherty3212]

Congratulations on the negative testing! I know it changes nothing about how you feel, but its so good to have that information. 💕

[@Its_me--Boo_Radley]

Your journey is just incredible. Thank you so much for sharing it. I hope your story helps someone facing similar challenges. Your uplifting tone, your beautiful smile and your "never give up" attitude are truly inspirational.

[@agirlnamedbrett.]

looking gorgeous as always! love your style. i feel like after watching you for over 2 years now i no longer take my good health for granted. more people need to hear these stories so they too can realize how blessed and lucky they are to be healthy along with educating themselves on all types of medical issues. thank you for that, waking me up to all these different conditions. as well as teaching me to always advocate for myself when it comes to medical situations. xoxo love from Maryland

[@akiyamada2306]

Truly, thank you so much for this. I am at the beginning of my cervical instability journey. And it is so scary and unknown.

[@hereternalsummer8224]

You are amazing girl!!!! I also saw your IG about this and wow! You have been through the ringer. What a fighting spirit. xoxox

[@theaaaa4180]

I found your channel through your first Feeding tube awareness video while doing online schooling and have been watching ever since ! I'm starting Uni this month with a major in Neuroscience, and I probably wouldn't have considered it without your insightful and informative channel. Thank you Christina! :)

[@janetjones1952]

I’m so pleased you are back. I have missed you beautiful lady. I can’t believe what you have been through. I’ve been watching you from the beginning. I wish you continued improvement. Wishing you the best and sending you lots of love. Xx❤️❤️

[@mitotakyrah9244]

We love hearing your story ❤️

[@ChronicLexi]

I hope you get some relief and comfort! I just started making videos about my struggle with EDS and other health issues! You are so strong and amazing! Youve been through so much. Sending love!

[@patriciaspence4220]

Thanks for sharing Christina. I have been following you for awhile!!! You look beautiful and healthy blessed 🙏🏽❤️

[@zealouszebras-thelangdonbu1189]

My Mama has a complete zipper. It’s been quite some time and the first few years were so hard for her but they didn’t know she had EDS at the time. She had a cervical fusion first that failed, then new surgeon and total spine fusion. She’s doing so great now. I have EDS too and now I’m looking at a craniocervical and lumbar fusion. My heart breaks for you, but you are one of the most amazing and inspirational individuals I’ve ever seen. God bless you. And your family 💜

[@taylorferrell8308]

You are so pretty and have such a wonderful attitude. Thank you for your videos they are a blessing!

[@huldren3]

Thinking of you and wishing you are in a relatively good place with your health right now. Much love winding its way across the Atlantic from Denmark 💕🤗

[@Goat.Cheese]

Thank you so much for making this video and sharing your wisdom with others. Your experience has really changed my path for the better 💙

[@simonassouline45]

Brave Heroic young lady with absolute humbleness and purity! May God Bless with Health and Prosperity in life!

[@mysticalanimallover5741]

so happy to c u posting again!! just got so exited to c u posted a new video❤️❤️❤️❤️

[@Kotohira_]

Christina your makeup and jewelry and hair work so well together to highlight how beautiful you are!! I've missed your videos! I also appreciate what you shared in the video... I was just so struck by your look in this video I had to comment on that!

[@creativeconfusion]

I have to say a huge thank you, your videos have given me SO much information that i needed to know to help my daughter. She was diagnosed with Dysautonomia/POTS this past October. Your experiences you've shared are so valuable. Thank you for sharing your experiences with us. ❤

[@sherrialice]

Wow. Well done Christina! Thank you for documenting and sharing your journey with us. We are saying prayers for you and your family. I hope your sister is recovered well als. Cheers.

[@mandolinraintaylor8376]

You are SO insanely cute. I've been watching you for 2+ years and I love checking in on you and your life. I hope you are feeling well and happy during all the insanity!!

[@thistooiseds3215]

Christina, I got the help I’ve gotten because of you (and chronically Jacque). Y’all were all the resources that I could find. I’m so sorry you didn’t have the same light at the end of the tunnel.

[@Joy.Elizabeth]

I pray you're doing well! 💜🙏🙏 Your videos have always been a blessing, your attitude n strength is just amazing n an inspiration. Being chronically ill myself I know doing videos would be so insanely hard but just wanted to say we miss you and pray you're doing well! 💜🌻 May God bless n heal you this year Christina! 🙏🙏

[@ratfacekick]

You are such a courageous pioneer, and millions of future people will owe their quality of life to you and a handful of others. Ive been to some dark places with CFS, but I dont know that Ill ever be able to comprehend struggling for breath and crumbling like you had to. Im creating an award for best human and giving it to you.

[@533134]

I wish there was a cure for EDS! It’s not fair that patients like you, don’t get to move like I can or others are able to.

[@michaelpaulos420]

Thank you for sharing your story. I'm in a bad way as well. I wish you all the best that life has to offer. You are a wonderful person! Best to you

[@emmyabroad]

I have a fused spine (T8-L5) and EDS and I have been LONGING to hear about someone else with my experience. My pain is so, so severe and I occasionally get in my head about it - but this is so validating to hear. Thank you for sharing everything you did

[@r.c.whitaker296]

You have really educated yourself on the important issues regarding your health and life. You are so strong, especially for being so young. Also I love the way you have your hair and makeup. You remind me of the great Joan Fontaine, with your lovely eyes and smile.

[@samanthaelizabeth8330]

You are the strongest person ever.

[@spaghetti0907]

It was through videos like yours that I even realized that all my symptoms were connected, and lead to my hEDS diagnosis. I’m also colorblind, partially deaf and have mild gastroparysis. It’s been 20 years for me, 2 since I was diagnosed with hEDS

[@marilumendoza7038]

Your Chanel has educated me more than any class or any other source. Thank you Cristina the warrior of EDS!!!

[@Frecklegirl74]

Thank you for this video. You are so resilient💙

[@HeatherBryant22]

I am 46 and found out about my SBO 4 years ago along with TC. Our chiari decompression surgery outcomes are very similar. Unfortunately it has taken me 7 years to find a good NS that knows EDS and then to afford to travel to him. I need to have the TC and SBO taken care of before anything else but financially it's not possible so I just keep doing the best I can. I am glad that you have a great care team!

[@kaylajuettner1492]

ENT's are absolute icons! Both my ENTs were the first people to spot my illnesses (or at least point me to the right specialist) and really listen to symptoms

[@sarahwithstars]

You are amazing my darling girl xxxx your makeup looks beautiful today xxxx

[@albanymountainhomestead]

So good to see you again, I have thought about you often. It's sad you have been through so much, and endured more due to doctors who don't know what they are doing. It's scary putting your spine in another person's hands. There's a lot doctors aren't telling their patients and having to figure it out yourself or find out later what "should" have been done. I don't have EDS, or POTS, but out of nowhere my spine took a shit and I have permanent nerve damage to my spinal cord which has been injured 2-3 times. I've had 2 disc herniations 4 spine surgeries, 2 surgeries by a doctor now in prison. To look at me you wouldn't know how bad things really are because you can't physically see it. It's frustrating to be so limited while others think your lazy. Thank you for sharing your story, because like you said, it may take seeing multiple doctors to find the right one.

[@juliherron8991]

Hi Christina, I am so glad to see you looking so much better. I was very concerned for your getting well. You look so great. I will be following your blog again. 😃😏😊😊😊😊

[@The-ii5mj]

You were always a delight to watch! No matter what you were going thru, I'm not ill but I still showed up to watch you. We'll miss u & if Ur doing this for U, fine...but if it's bcuz of neg comments, that saddens me. You've helped so many! I've read the comments myself. Hope your Mom, Dad & Sister r all well💖🙏✌

[@sophielouise1094]

Thanks for the video Christina! I’m just glad for any content you can make. Yay!

[@MyAsteriskLife]

Hiya im trying to grow my chronically ill community and I recently started a KZbin channel, if you please have a spare moment to subscribe to my channel I’d greatly appreciate it! Hannah xo kzbin.info/www/bejne/lWHTg6J8hayBg5I

[@lisacrumley4979]

Thank You so much Christina! You have shared so much more about your spinal surgeries. I'm sorry I'm not on Instagram. I had no idea how young you were when this all started. You are truly amazing and a rock star!! You have made me really rethink about my spinal operations. I have Adhesive Arachnoiditis and Beign Intracranial Hypertension. Which the IH was caused by my AA. It took me several neurosurgeons till I found the best one for me. I have had to shunt operations as well. I would like to see more videos on that as well. My surgeon does images and watches me for Chiari. He told me cause my shunt is wide open. Cause of my AA and I do Better with it like that. Also the strength you have and fight to over come this is truly inspiring to me. When I'm having a bad pain day I can watch one of your video's and not feel so bad or mad about my mine. Thank you for never sugar coating anything and being you! I hope your sister and mom, Dad are all doing good through these hard times right.💜😊

[@zkdltube0114]

I'm late watching this and I know this is weird from someone you don't know, but I felt incredibly proud of you watching this video. I hope things are getting easier by the day and will continue to do so 💕

[@mr.peoples9317]

I've really appreciate your sharing. Actually, I've shared this video with several of my providers. While I will not get into my particular condition, or the medical/surgical interventions I experienced, I would like you to know that you've helped me both in my knowledge base, and my mental health. Things were so brutal at times, that I was diagnosed with a moderate PTSD level. Really, I wish you could be without pain, cause I know intimately, just how painful ones body can be. Truly, your strength is contagious. Regards,

[@lil.seedling]

so thankful for you and what you do!! 💓💌💓

[@jmm1meow]

Amazing video, well done 💜💜💜

[@stephaniebrown1938]

Great video! I have POTS since brain surgeries in 2015 (I have a port too) and next week I have to have my 3rd ACDF. I'll have c3-c7 fused (& some refused) then. It was nice to hear you talk about adjacent segment disease bc noone does and also issues with POTS and spinal infusions.. It definitely feels like a lonely road. Thank you so much for sharing. 💜 Never.Give.Up

[@akaristu]

Having just been fused O-T9 (my 5th fusion) 4 weeks ago and in 4 more weeks, planning to be fused T9-S2, I am grateful for this video. I am also grateful for all your help and your friendship. There is just so little information out there about being fused so much. It makes it difficult to know what to expect. Sending you many blessings.

[@ehlersdanlosmom6847]

so much information in here, what a great video! Thank you for sharing so much. I've had some similar experiences to you. I wish I could get my dystonic attacks to go away! They did briefly post CCI fusion but returned after a couple weeks, mostly left side.

[@berter893]

I didn’t know EDS even existed until yesterday when you showed up on my recommended. I’ve watched a few of your videos and all I can say is you are seriously one badass woman.

[@maryharte2551]

You are great girl and don’t mind the people with the negative comments you go through a lot but always with a big smile on your face ❤️

[@lifescalling8080]

Thank you for sharing this! My son has hEDS and many other related conditions. No surgeries yet but I’m grateful for your advice! ❤

[@GunsNRoses1123]

I hope you are much better and I really hope you come back (of course only if your capable and want to) but I really miss you om youtube and still come here and check to see how your life is going.

[@ljwismer6028]

Just want to say that i fee for you. I had a not so fun experience a month ago after having TC surgery for the second time at RI Hospital. It was nothing compared to yours but it was bad enough that i chose seeing a non EDS aware neurosurgeon to handle then complicated because of my experience with the staff at that hospital. I’m really happy to see you sharing your eds experiences.

[@sarahwithstars]

Have you been swimming when the pool is a little cold and had that moment when your body realises that everything is at different temperatures? The cool water, your skin, your flesh, the metalwork, all conducting very little heat at slow speeds but all at different rates?? I don't go swimming anymore since my fusion coz it makes me feel so 'sick to my stomach' odd, it's like the metal in my spine is coming through my stomach with the coldness(?). It's very antisocial for everyone else if I were to vomit while still in the water because I can't get to my crutches quick enough... So I will selflessly give it all a miss for all of you xxxx Thank you for sharing this darling, I'm not surprised you have memories missing, parts must have been so traumatic. You really are incredible. I'm so honoured to have you in my life in any capacity xxxxx you help me keep going xxxxx

[@fineartlifestyling]

There is a saying “we are given exactly the wounds which we can teach others to heal”. You are that beacon for so many. It’s unjust, it’s unfair, it’s heart wrenching, it’s painful, it’s agony. But know that your experience, your unbreakable spirit and your compassion to share this with us is your legacy and a monument to all the ill and physically suffering. I send you all the love and health, I hope you thrive and continue on being the shining start that you are. It’s people like you who are the real heroes deserving of the title. Such courage, such grace, such strength!

[@karenbell3911]

I am 47 with spina bifilar occulta and congenital scoliosis. My condition was always so severe the Drs refused to operate. Thankfully apart from pain and a little spinal cord damage in my left foot I have not had any problems. Now my spine has fused itself with bone and I only have a little movement in my lumber spine. I am now having some neurological issues but my Dr is being very conservative because of my spine fusing itself with over 100 degree curves! I feel for you because I know this could have been my story too as I also have HSD. I agree with you that we make decisions based on the best information we have at the time. You are doing amazingly!

[@Eb611582]

I love hearing your experiences! I’m making these decisions right now. I have craniocervical instability, as well as some wonky stuff going on in my thoracic, low laying cerebellar tonsils (as my surgeon said “it’s not really a Chiari but they definitely aren’t in the right place”) and something that “would be weird in a normal patient but is probably normal since you have EDS” in my lumbar, whatever that means, LOL. I’ve consulting with an EDS specialist neurosurgeon and I’m hoping to get a second opinion with another before I decide what path to take.