My Entire Spine Collapsed - Spinal Fusion Update
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- čas přidán 29. 08. 2024
- Oh boy, This video was NOT an easy one to make! Thank you guys all for coming on this journey with me! Don't forget that everyone is different and just because we may share a diagnosis, that does not mean that you will experience any of the things I talk about in this video. I never want anyone to be scared after watching one of my videos! I can only share MY story and hope that I can help other who are going through similar experiences. If you are going through this, I am so sorry! I understand how difficult and lonely this can be. You are NOT alone! Hang in there!
I also know that not every story has a happy ending. I am very lucky to have beaten the odds and am aware that not everyone does. I hope that by raising awareness and helping with advocacy I can help to reduce the number of these cases that get to this point, but I know that it is inevitable that others will find themselves facing these same challenges. All my love to everyone reading this! And thank you for sticking around. If you need someone to talk to, my instagram DMs are always open!
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„It‘s not your fault“ is an awesome thing to hear from a doctor, isn‘t it? especially when no one knows why things happen.. or even worse, when you continuously get blamed for „things that just happen“.
I literally was totally calm until he said that and then started tearing up. It is so crazy to be getting that kind of news and THAT is what makes me cry still tio this day. I don't think he will ever know what it meant to hear that.
That is truly one of the most powerful things to hear... That my issues are not my fault for moving too much, not moving enough, moving wrong, not trying this or that, etc. To just have it acknowledged that... All of my hard work isn't the problem. That I don't need to blame myself for not doing enough.
I felt the “trying not to sneeze weird” part so hard. If I sneeze weird, I dislocate my rib
When I was diagnosed in 2019 when I was 31 I went into a dark hole. I was in so much pain and didn’t know what to do, then I found you. Your videos saved my life. The advice you gave to me on Instagram was so helpful and you make this journey not as scary for me. Thank you Christina. I appreciate you so much. Love the new videos. ❤
@@blissrose7243 I can relate 🙏🥹
@@blissrose7243 ditto
As an EDS patient, finding a surgeon who will do anything is hard. Just finding a primary care Dr who will manage your care is difficult. I'm so happy you found the care you desperately needed❤. Having your beautiful face back on here is glorious!
OMG, I had no idea that a spine could collapse. So glad that you were able to have it corrected.
your dedication to providing community support is so admirable, christina 🧡 so many stories we see are dramatised or fearmongering and i'm glad to see that there are people out there willing to be supportive instead. thank you for sharing your story 🌻
I've been watching you for so many years, I'm happy to hear from you again
This is ONLY to make you giggle when you sneeze or whatever, but you can now say to yourself that every time you sneeze, "Oh no, did i just pop a Rod?" Lol
I have internal bleeding amongst a ton of nerve issues, and 2021 was a hard year. I needed around 48 units of blood just that year. Anyway, my family's way is to make silly jokes out of horrible situations without hurting anyone, and my dad nicknamed me, "the lazy vampire." Because the blood was being brought to my port. I told him it's because I didn't like getting my teeth dirty. (That's our sense of humor) need a way to calm the nerves and make those around you more at ease. 15 years of this hoopla and 12 surgeries and a couple of organs later and I'm still no closer to an answer/cure/help. How many autoimmune diseases can one person have? I believe I'm kicking my own BEEP!
I love your personality, girl.
As last week my doc told me to make decisions in case I get worse (lung collapsing) with broken rib with no apparent reason, my husband didn't believe and now you can confirm that "MIRACLES DO EXIST" . THANK YOU SO MUCH FOR NEVER GIVING UP ON YOURSELF.
they def do! praying for your miracle and healing 💗🙏
You've really been through quite the ordeal. I can't even imagine what you've been going through. So glad you've finally found something that works for you. And a big thank you for sharing your story! I really hope you can enjoy your life again ❤ I'm glad you're still here
Amazing to see your joy! I also experienced an unexpected recovery after spinal fusion. Im now an occupational therapist at a specialist mobility clinic. Something I never saw as possible. The journey took time and unexpected turns but so full of the same joy you expressed. I can’t wait to see where your recovery takes you.
Thank you so much for sharing your story! Your first videos about the risks of spinal fusions and your experience helped lead me to making informed decisions. Sending so much love and good vibes your way!
I absolutely love reading this! I just seriously got SO excited for you! ❤️ I LOVE hearing this! And yay for OTs who get none of the praise they deserve. I know that you must be making big differences in a lot of lives! Thank you for sharing!
i started watching your videos back in 2015 or 2016 when i realized there was something wrong with my body. seeing you still alive and well and able to thrive is amazing, youve had so much to deal with and that feeling of things being over is one im searching for. im still searching for answers and this gives me tons of hope that theyre out there. im so glad you and your family didnt give up youre so important as an individual and a part of all your communities!!
I know you very likely have no idea who I am, but you are the reason I know what eds is and how I've been able deal with it. I'm finally, after 8 or 9 years getting an appointment to get my diagnosis. I'm 21 now and I'm so lucky to have been able to get a jump start at 12 all because if you. I can't thank you enough for the information and guidance you have given all of your viewers and im proud of you for knowing when an event is too fresh to talk about, after all, you need your oxygen mask first! I've seen every one of your videos and they have changed my life for the better, thank you so so much ❤️
Imagine all of your tragic and excruciatingly difficult experiences, have built into a knowledge for future surgeons to draw from, and make others lives better.
I am so, so thankful that you found a team of doctors and surgeons who have been able to give you so much of your life back!!
Christina, I can't imagine what these past four years have been like from you, I have followed your journey since late 2016 and through your videos I learned how to better self advocate (CFS/ME, Hashimoto's, and Fibromyalgia). You are so important to the EDS and chronic pain communities and seeing in this video? How you are so full of light once again made me cry because if anyone deserves this it's you. You deserve so much in this life, and I pray that God gives it to you ❤❤
I am so, so happy for you. Your ability to withstand all of this is mind boggling.
Bless you Christina..consider yourself a pioneer..this journey is no joke. But your bravery has helped me so much. Thank you for sharing your story. It makes me feel less of a freak of nature!
After watching your videos from years ago, then not seeing you for a few years and then recently enjoying your return to CZcams, this part of your story is absolutely amazing. I am so happy that you finally found THE doctor who could help you. I admire your understanding of your first doctor ... he did the best he could, and he knew when he couldn't do more. People with complicated histories have a much harder time connecting with doctors who have the very special knowledge to untangle all those complications. I am glad, so very, very glad, to see you upright, to know you are walking, and to celebrate that you now have a future worth living. ❤ PS. Your Mom and Dad are superstars. They have to be over the moon with your progress!
I have lupus with several organs failing and a lot going on right now. i cried yesterday because my cardiologist said.. i don't know, just because i guess, to severe hypotension and to just manage my fainting spells... after being told by an autonomic neuro on a good day for me, probably not autonomic because i didn't pass out, ent saying its not my ears and reg neuro saying its not my head.. having the cardio say eh.. it just is, manage it.. i was kinda done...ive decided to advocate for myself and dig deeper to be sure. thank u for that encouragement. Thanks for coming back to you tube and i missed ya! love from Montreal, Quebec
I believe there are always more answers to be had. We like to say that with even our bad doctor experiences we are still always left with another little “nugget” of information that we didn’t have before 💕
All I can feel for you is admiration. You are an extremely strong young woman. You deserve the best life possible. Keep up with the good fight!!
Oh dear Christina, you have literally been through so much. I can’t even begin to imagine what it must be like for you. I’m praying for you and your well being ❤🙏 I don’t suffer from E.D. but I do have a chronic illness that greatly affects my mobility. You are such a wise young woman and I appreciate all of the detailed information you provide in all of your videos. I wish you luck throughout the rest of your journey. I hope you are finally able to come to a point in your life where your days are free from pain. You deserve a happy peaceful life ❤ Take care Christina
Christina, am so delighted that you finally found answers through your and your mother's tenacity towards your recovery. Thank God you eventually found the right surgeon for you and the surgery was a complete success. Hope you continue to make strides on your recovery and get back to living your full life. I have been watching your videos for a number of years and love to hear your progress. Take care. Geraldine from Dublin, Ireland ❤❤❤
I have EDS as well, but I am privileged that it causes me little to no issues. I am sorry you went through all this, and I hope now you can finally be on the road to stability.
I also have EDS and waiting for a 5 level fusion (C4 to T2). My spinal cord severely compressed at two levels - but my surgeon has concerns that I have issues elsewhere in my spine so he is still doing more tests. (MRI whole spine and standing plus nerve testing). I lost the use of my hands earlier this year which wasn't good. Our concern is with the risk of ADD which is high due to EDS and the size of the fusion. I've been following your journey and I'm in awe of how you have coped.
Yay!!! Congratulations on such a huge breakthrough Christina.
The level of determination and intelligence from both you and your Mum is off the charts (lol). Your new medical team sound magical and hopefully over time your brain can believe that you have a level of safety that you haven't had in a long time.
I can't wait to hear more about how PT is going - you're going to get so strong! Your new stable foundation is very, very deserved and I hope each day brings you feelings of relief, freedom, and contentment.
And well-wishes to your family - from Melbourne Australia :)
P.S. I just wanted to acknowledge that your experience will never be tied up in a neat little bow, life is still messy, and continuing to have feelings of sadness, grief, frustration and fear is so incredibly valid and ok xx
I would love to do some fitness journey vlogs! 💕
@@christinadoherty3212
Sweet! I remember seeing how pumped you were to go to your PT in the past :)
I'm trying to get my head around fitness since my recent EDS diagnosis - turns out I was doing a bunch of things that were really not POTS or joint-friendly.
It'd be refreshing to see something relatable when mainstream fitness trends aren't possible or accessible for lots of us in the chronic illness community.
I cried so much watching this , im so happy for you 😢
Still getting used to seeing you here again and it's so amazing!!! ❤ so so so happy for you!
What an absolute Godsend these surgeons have been. I'm so grateful to God for putting them in your path. He's been looking out for you.
Work in progress... Aren't we all? I'm praying for you. **hugs**
Ohhh Christina what a JOY to see your beautiful face and spirit back here! Thank you for updating us. I am thanking God for your good news ❤ May the years the locusts have eaten be repaid tenfold. Huge love to you from this stranger who’s been following your story for many years now and wishes you the most wonderful next chapter xxx
Thank you for sharing! As I am wrapping up med school and starting residency (with eds), I am very thankful for your insights and inputs on how to provide better care
AAAAH, that's incredible!! I'm so proud of you for being able to handle all that & put your efforts towards helping others. 💕
I'm unable to handle traditional college or anything, but I'm learning data science via programming & hope that I can get a Biology degree from home one day to study bioinformatics... Even if I can only synthesize the data Drs & researchers need, at least I'm doing something.
Thank you for sharing more of your story. You have been through so much. Happy to hear that you have doctors who took the time to do the work necessary to put you together correctly. Blessings to you. Look forward to hearing more about your recovery.
Hey Christina. As someone who has followed your story off and on over the past years, I'm happy to see the progress you've made with everything you've been through. I can't imagine some of the things you've had to overcome, but I've been there in many ways. I'm a young cancer patient/survivor. So, I've done surgeries, had the complications, etc. One thing you talked about, "the haze" of when you were not really living and just knew pain and medication...I really connected with that. I went through that exact haze you described. I had the surgery to remove my stomach so that the cancer was out of my body, and then I knew nothing but pain and medication for 3 years. Like you, I also was put on Palliative Care so they can just keep pumping me full of comfort meds. That whole 3 year block is a fog of indistinct suffering. I'm happy to not only be on the other side of that, but to see you come out of that yourself. I really wish you the best in your journey into getting better and more functional. You definitely have my support. Thanks for sharing your story.
i'm so glad for you to finally have found a solution that seems to have worked and allow you to get better. although the surgery and recovery sound horrific, it's amazing to see you finally actually see real progress and return of function.
So wonderful to hear there is a happy ending to this story. You seem to be thriving. I am so sorry for all the suffering you had to endure. Your story truly is one of hope and never giving up.
Time to snuggle down in bed, curl up with my cat and watch this documentary you've produced! Love love love always!
I’m so glad that you found this surgeon. It’s hard! All of it is hard. I agree with you entirely, there aren’t people exactly the same even with the same diagnosis, not all doctors work for everyone and not all treatments (or diets or supplements or jobs etc etc. etc) are right for every person! I think though we can usually learn stuff from everyone’s story (as you have provided) and apply them to our own lives and journeys. Thanks so much for sharing and everything you do for people!! Xo
you are such a joy and inspiration you look healthy and amazing
That's gotta be the craziest sensation and pain in the world to experience with you whole spine literally collapsing on its spinal cord and discs slipping everywhere! Like you might be one of the only few hundred people in the world to experience that! I have been watching your vids recently cause I am due for a revision surgery for Chiari at age 23 and my first surgery was at 4 in 2005. My L spine is already arthritic too and my CCI is getting worse. My lumbar spine is also losing its lordosis for some reason. I have had tethered cord surgery back in 2007 so maybe thats why? Its weird. I am doing as much PT as I can to avoid any type of fusion so I can continue to drive and birdwatch. I also have EDS which I have mostly kept it controlled with PT and muscles strengthening as well. Thank you for sharing this! I hope you continue to have a good life and I will still follow your journey! There are many of us out here who feem your pain!
Geez i am so sorry for you having to go through all of this! I have chronic pain and i cant imagine going through this! Im glad you are doing so much better though! I have been subbed to you for years and im glad you're so much happier and feeling better
I am in awe that you are alive and well and finding your way into your life again. This story was so riveting and I'm grateful you shared it.
😣! Sending you lots of positive vibes and gentle hugs from a fellow EDS Zebra 🦓, I have subluxated my ankle just from getting clothes out of the washing machine and putting them in the dryer. So now I try to stay put and just toss them into the dryer while standing in front of the washing machine.
You are an amazing speaker and storyteller. This was like a TED talk! I am impressed
I thought of you this morning as the PT started to wrap my hubby's leg with short stretch bandages for his lymphadema. Your information has helped me to stay (semi-) calm and hopeful as he's dealt with sepsis and lymphadema. Thank you. I'm glad you're posting as you are able. We own a gait belt with handles thanks to you. It's much easier on my bendy fingers when I help my Mom after joint replacement.
I'm so grateful for you to have gotten the care you needed. I got diagnosed with EDS in 2020 so right when you stopped making videos. Your videos helped me so much then & I'm really happy to get to be here now that you're back. So it's nice to finally say hello! I'm glad you're back.
Hi Christina! Merry meet! The algorithm somehow sent me here and you definitely earned my sub! You made me feel like I was hanging out with an old friend and just catching up. I'm so glad that you have been able to regain your life. At one time, I was completely homebound and just trying to get to that next pain pill. My health stole a good portion of my ability to raise my daughter, which I've come to terms with. I share some similar health stuff with you, and we have a lot in common. My surgery count,😮 mostly orthopedic, is at 27. Sadly, 28 will be next month.
I do have a channel, but I've not posted any health stuff in a long time. There's a video that I'm really proud of, though, detailing a bad day.
Looking forward to more videos and catching up with your old work. Hugs 💜💜💜
🙏🙏🙏🙏🙏❤️
Thank you for sharing such a vulnerable experience with us! Your story matters! From a chronic pain (endo) person I empathize with you, and I wish you all the best. I've been following your story for a long time, and I'm so happy to see you back making videos. I hope the past will stay in the past for you!
Just hearing all of this was a wild ride, I can't even imagine how it felt to go through it. I'm so glad your surgery was able to do so much for you!
This is such an AMAZING outcome ❤ You look GORGEOUS as usual ❤❤❤
By the end of this video, I was in tears. I'm SO HAPPY that you finally got the answers you needed & the surgery that gave you your lease on life!!
I've been following you since the beginning & you have been such a valuable resource... Not just for info on EDS, but someone who makes me feel less alone. I don't have quite as many complications as you, but my level of function is so impacted that I don't even feel like I belong in my peer group. I can't drive, I can't really work, I have difficulty attending social functions... There are some things I can do & some days are better than others, but i's hard to be in my 30s & feel like a child. Being along for the ride on your journey has been so validating.
So... Maybe it's parasocial nonsense, maybe it's the parts of your story that I can relate to, but I'm so ELATED that you are recovering!! You deserve these wins so much. 💖
And congrats on the exercise & PT success! I've been in & out of PT & even tho it can hurt, I always feel much more mental clarity when I can get moving! And any improvement in physical strength helps us w/ EDS avoid deteriorating further.
Experience is purely subjective. Thank you for expressing your experience so eloquently.
Hi Christina!! So happy to see another vid from you. 💜
I wanted to say thank you to you and your lovely mom for indeed asking the right questions.. this video has led me down a Google search hole to see if they're are any more answers out there. My surgeon told me the same thing last visit-no more options to treat my AA. But come to find out, I switched steroids a few months back, but not the right kind! Apparently you need something that crossed the blood brain barrier specifically and these do a worse job! So holy moly, I might have a simple fix to get the horrible nerve pains and deterioration if function back on track❤ and as always thanks nfor sharing everything and being so vulnerable ❤
Thank you for sharing your journey. I'm glad you found hope. ❤ It gives me hope for some of the issues I deal with, too. Ehler's Danlos is such an interesting condition and medicine is always learning.
It is so nice to see your beautiful face again. We have missed you. ❤❤❤
You had your turn around surgery the day after I had my OC5 fusion which provided so much infrastructure and relief. Today is the one year anniversary of the second detethering and I’m lying in a hospital bed watching you after getting the last of the screws out from an acdf done in 2019. (I am allergic to titanium evidently so I had to have all hardware removed. The OC fusion was removed last May.)
Your willingness to share your story directed my focus back in 2017-2019- when I was getting zero help from the local medical community. So it’s very fitting I’m lying here watching you talk about your turn around
I’m incredibly saddened by your journey and I’m also incredibly grateful that you persevered as you have! Bravo!
And I gotta say the obvious, “Your mother is phenomenal!” Your dad probably is as well, but I know more about your mom’s participation in your journey so that’s why I’m underscoring her awesomeness at the moment. I have high respect and praise for her.
I hope lauren is well!
Thank you for bringing your story full circle for us. I hope all the insanity and the hell that it was is in the past - forever!
I’ll be forever grateful for you!
Aww you are such a gem! Thank you for saying that. I love my family. But my mom is DEFINITELY a special one. She deserves so much credit. Theres nothing I have gone through that she wasn’t right there for. Shes truly a rockstar. But my Dad is pretty darn special too 😉
As a fellow EDSer with horrible spinal fusion pain this gives me hope! Thank you for sharing your very difficult journey with us. ❤
I'm only a few minutes into the video, but wanted to say I'm always happy to see you pop up on my CZcams feed. I've followed you here since at least 2017. (I remember watching your weekly vlogs while playing Breath of the Wild, because that game stressed me out a bit sometimes and I wanted the virtual company.) I've been keeping up with your Instagram in recent years, and just glad to hear how you're doing. I just have 'loose ligaments' with no specific further diagnosis and only mild problems, certainly by comparison. I like seeing how you still adapt things so you can do them! I have to do a bit of adapting here and there, and it reminds me that there's so many ways to do what I want to do!
I also crochet a bit (I've been prioritizing other things; my hands and wrists give me the most trouble and I also like to play video games and do art) and it's been really fun to see you enjoy that too! I've also had a few mental breakdowns... wishing you the best with everything!
I so get why it's hard to do this .. I have been hoping/attempting to speak out myself but when it gets to this kind of point it is incredibly hard cause it's so overwhelming/traumatic .. I get this. It's like a form of writers' block and is so rough
My mom just had an ER visit and immediate admittance for surgery because her gall bladder was basically just stones, and yeah, same thing, she felt bad off and on, and then suddenly just got super sick after a few stones loosed themselves into her bile duct.
Amazing to see another video.
I was in a similar place when I found your videos in 2017. It breaks my heart to hear you describe such misery 💕
I'm so glad to hear of your improvements and that you finally got a surgeon that knew how to help you. Hugs & blessings💜💜💜
You have such incredible resilience. You do what you gotta do to survive throughout all that time, and even with all the trauma, you find a way to help people where you can. It's so good to hear that you're doing better now than you were a few years ago. You're a bright light in this community, and I hope you continue to thrive and shine.
Wow, just wow. I'm so thankful for your outcome. Amazing.
🌻 throughout this video i kept thinking back to that one clip where you danced with your physical therapist. And i would love, if, now that you are at a point in your life again where you are making progress in physical therapy again, we could get a remake of that clip
So glad you’re doing so much better!❤️
So joyous ❤ thanks for your generous honesty. Your fabulous . Can’t wait to hear more . Your mom is a dream .
We've missed you Christina! I follow you on IG so I was so excited to see you posted on your story about this. You look fantastic btw.
this was gut wrenchingly hopeful, and amazing reminders
So great to see you! You have been through hell and back! I’m so so happy that your surgery finally went well. I pray it stays like that, wishing you many happy and healthy years of stability and no pain. By the way, I listen to a chronic illness podcast called „Major pain podcast“- I think k you might enjoy it, and you would be an amazing guest as well.
Thank you for sharing all of this. It must have been so hard to go through all of that, and have to relieve again true telling us
Im so glad that you have this new opportunity to follow your dreams. Thank you for sharing your story
I was just thinking about you the other day! How lovely to see you again!
So happy to see your beautiful face on CZcams again! I’m another long time follower of yours whom you’ve helped over the years. Thank you for sharing yourself with the world! And give your mom plenty of hugs from us for being so amazing. ❤❤❤
Your hair is so beautiful
I really don’t have the words. You are so incredibly brave! I recently had my c1 and c2 fused and I’m in awe of your strength! Thank you so much for sharing this!
I can tell you e made great recovery strides. So good.
I’ve followed your journey for years so glad you took the time to share your experience and knowledge with us ❤
It's absolutely amazing to see you again! You look so rosey cheeked and healthy! I was always so worried for you, especially when you had that awful nurse afrer surgery that left you alone. I am so happy for you to have a beautiful life! All the best! Love your content!
Gosh I have so many awful nurse stories. Maybe one day ill share some 🤣 But you are such a sweetheart 💕 Thank you!
I can’t imagine how much force was involved to break titanium rods but I hope that’s validating for how intense your recovery/non recovery was leading up to that 😬
❤❤❤❤❤❤❤❤❤❤❤❤❤❤ SO happy for you, Christina! Congratulations! ❤️🇨🇦
We ❤u girl!!! I’ve been here since beginning! Dino :)
Beautiful and hopeful story. Thank you for sharing. ❤ it helped me to hear your words and reminders.
My beautiful girl you are so amazing, love you to pieces
God be with you always ☦
So interesting. So happy for you. Thank you for updating.
I had CCI & AAI.. got fused C0-C2 with Dr. H…. 2 years later a physical therapist dislocated my C4/5. Dr. H fused my c4/5/6 anterior. I had another neurosurgeon in Detroit where I lived ( during Covid) fixed my tethered cord, but I busted my dura within 2 weeks and needed another surgery to fix my dura healing on outside of my spine!
🙏🙏🙏🙏❤️
I just adore you! ❤
Prayers forever
Thank you for this video and for sharing this hard part of your life. I always appreciate your insight and information
so happy to see you its great to let it all out love you
I am so happy to hear that you're doing so much better since your surgery Christina.
Do you mind sharing your doctor's name? I know someone in a similar situation who could greatly benefit from this doctor's expertise. Thank you so much.
❤❤❤❤❤❤❤thanks for sharing I'm so so happy u r doing great. U deserve the best!!!!!!!!
Hello, I use Google Translate to talk to you. My name is Ali, from the Arab country of Iraq. I subscribe to your channel. Beautiful video. I am honored to have you. You are a wonderful person.
I hope youre okay darling I always worry about you
🌻
Christina, when I tell you, you are my twin! We are similar ages I think, you may be a bit younger than me but I have long dark curly hair, a nose ring on the same side as you, glasses, even my bottom teeth look similar to yours, and wanna know what’s even more freaky?! I have EDS! So crazy!!!
Hah! I love that we have twinning teeth! 🤣 I had them straightened with braces and then an anesthesiologist knocked them loose intubating me. So they are back to how they used to be. I kinda like them 🥰
Love you warrior ❤️
Hey Christina - I'm not sure if you've looked into this but it sounds like it's less of a case of your implants failing structurally and more of a case of you being allergic to the titanium. You have all the classic symptoms of implant rejection.
This is super interesting! Its possible. But I don’t have any issues with my leg or even earrings. But it’s something worth finding out as my skull hardware is extremely painful 🤔
Congratulations Christina ❤, I never write a script but maybe I should .
I NEVER would have been able to do it without a script having so many years and so few true memories 🤣 in the correct order. I had to do so much research into myself. I’m glad I kept journals and have my mom and her notes. But it really does help having the biggest points laid out.
God bless you 🙏. Sweet lady.