From the bottom of my heart, I want to thank you for sharing your story and spreading awareness on this platform, in spite of the haters. I'm a fellow sufferer, struggling to find answers. I'm waiting for my test results for EDS. In the meantime, I have symptoms of CCI and have been tentatively diagnosed with CCI in a broad scope. I am on a waitlist to see Dr Bolognese, So that I get a second opinion and more accurate identification on what type of CCI I have. One thing that has helped my quality of life is pursuing NUCCA styled Chiropractic. After the first month of getting adjusted twice a week, I have felt sensations in my limbs that I haven't felt in 3 years.... I forgot what it was like to have control of my limbs, because I spent so long working with impaired functionality and strength. I've had strange issues by entire life, but my life sunk for the worst after my accident in 2019 where I hit my head pretty good on the ground going 25mph. Best of which is on your journey, keep speaking out! Maybe I will also speak out
Thanks for making this. I think I 120% have this. I had my Chiari decompression surgery 12 yrs ago after my stroke and ever since I’ve felt like a bobble head. My pain management doc I’ve had for 10 years got me on the correct meds finally. Had my life back but then I moved and this new doc took me off of EVERYTHING😢because he says I’m too young. Ugh. So now starting all over again. The pain is unbearable. But I am meeting a new doctor in 2 weeks cause the other one doesn’t believe anything!
You're welcome. sorry I didn't read this earlier, I've been having a rough time myself. I'm sorry you're going through that. It is brutal, I know:( *hugs to you*
I'm sorry to hear that. It's really terrible and we shouldn't have to go through this without adequate support at the end of the tunnel. :( Please reach out if you want to be interviewed for my upcoming audio podcast.
Thank you for making this video. I haven’t been formally diagnosed with CCI, however I’m around 80% sure that I have the condition. If I don’t have CCI, then I have something mimicking it. I live in the UK and may have to fly to the US to even get a diagnosis via DMX. Very difficult to live with such symptoms, especially when I used to be healthy, so I completely relate to what you were saying about feeling suicidal. However I do desire to live and regain quality of life, so I’m not giving up just yet. Thanks again, and I hope you regain quality of life.
@@dreamerqueennotunderthemachine Seems to be the case. I haven’t been able to find a place yet here in the UK that has a DMX. I can fly to the US, but It’s not ideal.
Wow such a long way to go for that - and so pricey to have to travel that far as well as get the imaging piece .. where are you planning to go, to get that done? I have a DMX right across the water here in Langley BC near Vancouver. Have you looked into whether there is anywhere on mainland Europe that might have one? Germany or Poland? My friend went to a Polish neurosurgeon, and I don't know about the DMX specifically but I know he was doing some very particular tests for occult tethered chord syndrome, so he might know about specialized diagnostics or where to get them.
Hi Rebecca:) This is the first time I've even been asked this question and it's really refreshing, because we with CCI endure so much lack of support, minimization, even disbelief that it is traumatic and breaks us down. First of all, being concerned to learn how to truly support your friend makes you such a good friend for caring! First of all, believing your friend and their experience alone means a lot to them. Supporting them when they are (likely repeatedly) faced with disbelief and medical gaslighting, via emotionally and logically. Learning what you can about CCI will help you to understand their limits and debility and pain they suffer. Finding ways to do things that are minimally exerting but still fun, like watching a movie with them, or if you drive and they're up to it taking them for a short outing to go sit at a beach and watch the sunset, asking them what they feel up to doing and like to do. Thanks for asking
Thank you for sharing this. My son is 14 and has hEDS & CCI, plus multiple other diagnoses. I pray that you can find good treatment!
From the bottom of my heart, I want to thank you for sharing your story and spreading awareness on this platform, in spite of the haters. I'm a fellow sufferer, struggling to find answers. I'm waiting for my test results for EDS. In the meantime, I have symptoms of CCI and have been tentatively diagnosed with CCI in a broad scope. I am on a waitlist to see Dr Bolognese, So that I get a second opinion and more accurate identification on what type of CCI I have. One thing that has helped my quality of life is pursuing NUCCA styled Chiropractic. After the first month of getting adjusted twice a week, I have felt sensations in my limbs that I haven't felt in 3 years.... I forgot what it was like to have control of my limbs, because I spent so long working with impaired functionality and strength. I've had strange issues by entire life, but my life sunk for the worst after my accident in 2019 where I hit my head pretty good on the ground going 25mph. Best of which is on your journey, keep speaking out! Maybe I will also speak out
Thanks for making this. I think I 120% have this. I had my Chiari decompression surgery 12 yrs ago after my stroke and ever since I’ve felt like a bobble head. My pain management doc I’ve had for 10 years got me on the correct meds finally. Had my life back but then I moved and this new doc took me off of EVERYTHING😢because he says I’m too young. Ugh. So now starting all over again. The pain is unbearable. But I am meeting a new doctor in 2 weeks cause the other one doesn’t believe anything!
You're welcome. sorry I didn't read this earlier, I've been having a rough time myself. I'm sorry you're going through that. It is brutal, I know:( *hugs to you*
Great info for awareness hun ❤️❤️🤗👏🏼
Thanks for sharing your experience. I wish you good fortune with your challenges 🎉 💐
thank you so much
Thank you. I can’t support my head anymore. Frightening.
I'm sorry to hear that. It's really terrible and we shouldn't have to go through this without adequate support at the end of the tunnel. :( Please reach out if you want to be interviewed for my upcoming audio podcast.
Thank you for making this video.
I haven’t been formally diagnosed with CCI, however I’m around 80% sure that I have the condition. If I don’t have CCI, then I have something mimicking it. I live in the UK and may have to fly to the US to even get a diagnosis via DMX.
Very difficult to live with such symptoms, especially when I used to be healthy, so I completely relate to what you were saying about feeling suicidal.
However I do desire to live and regain quality of life, so I’m not giving up just yet.
Thanks again, and I hope you regain quality of life.
It's so hard yeah. Oh no they don't even have a DMX in the UK?? That really sucks. Are you able to fly to the US?
@@dreamerqueennotunderthemachine Seems to be the case. I haven’t been able to find a place yet here in the UK that has a DMX. I can fly to the US, but It’s not ideal.
Wow such a long way to go for that - and so pricey to have to travel that far as well as get the imaging piece .. where are you planning to go, to get that done? I have a DMX right across the water here in Langley BC near Vancouver. Have you looked into whether there is anywhere on mainland Europe that might have one? Germany or Poland? My friend went to a Polish neurosurgeon, and I don't know about the DMX specifically but I know he was doing some very particular tests for occult tethered chord syndrome, so he might know about specialized diagnostics or where to get them.
Thank you for this video!! Do you have any advice for how to support a friend through CCI?
Hi Rebecca:) This is the first time I've even been asked this question and it's really refreshing, because we with CCI endure so much lack of support, minimization, even disbelief that it is traumatic and breaks us down. First of all, being concerned to learn how to truly support your friend makes you such a good friend for caring! First of all, believing your friend and their experience alone means a lot to them. Supporting them when they are (likely repeatedly) faced with disbelief and medical gaslighting, via emotionally and logically. Learning what you can about CCI will help you to understand their limits and debility and pain they suffer. Finding ways to do things that are minimally exerting but still fun, like watching a movie with them, or if you drive and they're up to it taking them for a short outing to go sit at a beach and watch the sunset, asking them what they feel up to doing and like to do. Thanks for asking