Living with EDS: My Spinal Fusion Story | What They Don't Tell You + Answering Questions
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- Опубликовано: 2 июн 2020
- 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 ...
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No news of you, hope you’ll come back around here one day. Loved your videos.
She just posted on Instagram (link on her channel) she seems okay!
@@AryckeNot buying it. Why would she just stop posting here
I keep coming back to check on you. Hope you’re doing well.
She just posted on Instagram (link on her channel) she seems okay!
@@Arycke Those are just copies of previous Instagram posts. Not new material. I am not comforted by it -- at all.
Same same! Always Hoping she’s doing well!
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
@@zeynand4039 Thank you, I am doing much better! ❤️
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.
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. 🙏😘💨
Tay Katoo YES!!!!! I second (or 15) this so much!!! (Also the skeleton of Yoda has me 🤣)
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
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.
Guys try praying .. seriously, Jesus loves us . Its the next life which is eternal.
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.
Really miss seeing you on RUclips, hope you decide to come back and start posting again❤
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.
You can follow her Instagram: watercolor_me_impressed
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.
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.
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
I’m with you: an EDS-literate neurosurgeon is a minimum requirement.
You are one of the strongest person I know, Christina. And you've done nothing wrong. Sometimes circumstances are beyond us.
Totally agree with this comment Cheryl.
Why is it good people suffer?
@@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
@@johnnyrodriguez276 bro check out on you tube faith for miracles by Duane sheriff its amazing and gives us hope in miracles
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!
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.
Please do another video and let us know you’re ok.🙂
I miss you. This is hard
But please come back make
More videos
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!!!!
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. 💜🤟🦓💪
Congratulations on the negative testing! I know it changes nothing about how you feel, but its so good to have that information. 💕
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 💜
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.
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.
Amazing video, well done 💜💜💜
Looking so good hun. Nice to see you posting 🖤
Glad to see you making video again! Love from the hanclan!
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.
so happy to c u posting again!! just got so exited to c u posted a new video❤️❤️❤️❤️
We love hearing your story ❤️
so thankful for you and what you do!! 💓💌💓
Thank you for sharing that story. You are so strong!
Glad You are doing well glad You are back and posting again God Bless
You are glowing! What a champion ♡
I'm so happy to see you up and around again.
Thank you for this video. You are so resilient💙
I am so glad for your content. I have missed seeing you. I am just starting down this journey with EDS learning to deal with it, learn about it. I have of course had issues most of my life but it took me 20+ years to get a diagnosis and now we are on a steep learning curve.
Samee 24 years
Oh my, I can't imagine all you've through.
I just got dianosed at 40
Hi Christina! It’s lovely to see you looking so well xxxxxxxxx
Thanks for being you! I hope you are doing amazing! It makes a world of difference to hear other people go through similar things.
Great to see you here Christina, love you girl stay safe! 💕
So glad you are back. You have been missed.❤️
I'm so proud of you. Sending you love ❤️ sweetie. Stay strong warrior 💪
This information is SO helpful for us as we are making decisions!
You are amazing my darling girl xxxx your makeup looks beautiful today xxxx
Your strength is so amazing Christina, keep on fighting your journey ❤
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.
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
You are an inspiration to a lot of people well done you for keeping going and never giving up ❤️
Hermosa!!! We missed you 🌼 hope Lauren and your parents are doing well
I miss your videos. Crazy beyond beautiful. Prayers.
Thanks for sharing Christina. I have been following you for awhile!!! You look beautiful and healthy blessed 🙏🏽❤️
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 ❤️❤️
You are amazing girl!!!! I also saw your IG about this and wow! You have been through the ringer. What a fighting spirit. xoxox
I've followed you for a while now Christina, and you're my guiding light. You are an angel!
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
You are so pretty and have such a wonderful attitude. Thank you for your videos they are a blessing!
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. ❤
Soooo glad to see you back, Christina! I’ve missed you. Nice to see you looking so well. You are beautiful and strong.
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.
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.
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 🤟🏻😘♥️
You are just such a sweet woman
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.
Thank you so much for making this video and sharing your wisdom with others. Your experience has really changed my path for the better 💙
It's been so long hope you are doing well. You are an amazingly strong young lady
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 💕🤗
OMG, your skin looks beautiful.
Yes! OMG it's perfect!!
Y’all, it’s the EDS. It’s one of the few good things about it. 🤪
Not that Christina hasn’t worked hard on skin care and hygiene. She has! Especially noteworthy with all she has been through.
But that smooth skin, even into one’s older years-and which makes us look younger than we are-is usually down to the EDS and genetics.
Sally seriously tho!
@@andreahultman8272 Perhaps for some. I'm sure you know that while EDS patients are known for having soft "velvet" skin that it also means that they can be more susceptible to wrinkling of the skin.
Magdalena, true.
I was thinking of those of us with hEDS.
My sister and I are in our 40s and have spent most of our lives looking 10 years younger or more.
She has hEDS, and we suspect I do and that our mother did. (Most of our weird genetic stuff comes from Mom’s side.)
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.
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.
Your strength is helping me find my own right now ❤️
I tell people no to do anything on the spine unless it is absolutely life and death basically. And in general avoiding any joint surgeries unless absolutely necessary because the results are just not good most of the time.
Most people with EDS fall down the spine surgery rabbit hole where they fuse one area and then develop instability above/below the fusion (due to EDS) and end up with their whole spine fused. I have seen SO many people have this happen. I mean so many.
I have significant spine issues but I am getting multiple opinions and not doing surgery unless I absolutely have to. I already have two fused shoulders and I am about to have my knee majorly reconstructed. I have severe joint instability and I am worried about ending up with a lot of my joints fused.
Yikes! I can definitely see why you are wary of surgery and I definitely agree. Movement will find a place to settle. With your shoulders and knee, spinal surgery would be really difficult
Check into Dr. Ross Hauser at Caring Medical in Fort Myers, Florida. He does regenerative with prolotherapy injections that resolves any spine or joint instability. Thank me later.
P.s. (Sugar based solutions injections) guided with fluoroscopy or ultrasound guidance.
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!
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❤️❤️
I love your honesty dear god
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! :)
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,
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! 🙏🙏
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.
Truly, thank you so much for this. I am at the beginning of my cervical instability journey. And it is so scary and unknown.
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
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.
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!
Thanks for the video Christina! I’m just glad for any content you can make. Yay!
Hiya im trying to grow my chronically ill community and I recently started a RUclips channel, if you please have a spare moment to subscribe to my channel I’d greatly appreciate it! Hannah xo
ruclips.net/video/_0pRoFPGNM0/видео.html
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!
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.💜😊
Brave Heroic young lady with absolute humbleness and purity! May God Bless with Health and Prosperity in life!
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.
Thinking about you. Miss seeing vlogs from you. ❤️
I just got diagnosed with CCI too! Thank you!!
I'm so glad to know that Christina is well during this pandemic.
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!!
God bless you...thank you so much for all the information you have shared with people like me.
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. 😃😏😊😊😊😊
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.
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!
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
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.
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💖🙏✌
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
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 💕
I'm glad to see you sweetie :)
It's great to see one of these longer videos with a theme, topic or story to them from you, because you always speak so well about the facts and feelings, but don't worry: I don't think any of us thought you were trying to turn this channel into a sales channel! Those were all useful and helpful videos about products that you thought might benefit other people too.
As far as the other criticisms are concerned: I've never seen anything of yours that has seemed self-pitying, relentless in its focus on the difficult, the dramatic and the negative for the sake of garnering people's attention, bumping up viewing figures or making people feel sorry for you. Your content has always struck me as an honest reflection of what your experiences with a particularly severe series of EDS complications have been, shared in the hope of guiding others, in the medical field and in wider society, to understand better what this condition can involve and what people with it can need, and because you're a human who'd like friendly support and understanding from other people as we all do. You're one of my favourite health-related channels to watch because I've always sensed a simple truthfulness to what you put out there; you neither disguise nor exaggerate. The people who complain that you go on about your health challenges excessively either a) expect some form of entertainment that I don't imagine this channel was created to provide or b) misunderstand how very all-consuming and turbulent a serious chronic illness can be!
And as for those who complain you haven't had it hard enough... well, from my recollection you've always emphasised that you don't speak for anyone in the EDS community besides yourself; and though I understand a person's envy at seeing someone else have care or opportunities or possibilities or comfort that they don't, nothing is helped by reducing everyone to an equal state of pain and desperation. I'd hope that everyone's story can be told, but I see nothing wrong with you telling yours. Keep going. I think you do fabulous work on this channel.
It’s so refreshing to come across a well-written comment, bravo! I agree with everything you said 👌🏻👌🏻👍🏻
Bravo'
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
Your Chanel has educated me more than any class or any other source. Thank you Cristina the warrior of EDS!!!