Hey Chey! I can't wait until I can ACTUALLY FULLY watch this video! I use my cellphone for internet access and for the first time in months I actually used up all my good data! So basically thats kinda like my RUclips is broken for about a week :( But your video will certainly be one at the top of my list to catch up on!:) Thanks for posting a new one! :) P.s. I did hear u say you tried the shoe lift, I can totally relate. I tried that in 2009 and just couldn't tolerate them, for me they made the pain all the more extreme.
I am a zebra fighter as well!!! along with all the dislocations that i deal with everyday, 2 years ago I had a serious dislocation in my back that caused paraplegic issues as I gained me left leg back I still have drop foot on the left side an my right leg is paralyzed still so I have to wear a afo (ankles foot orthotic ) on the left and a kafo (knee ankle foot orthotic ) on the right. I also have the silver ring splints. An wake up to at least 4 to 7 (if not more) dislocations every morning an have more during the day. it sucks. from a zebra fighter to the next my support goes out to you and I love you videos about EDS!!! STAY STRONG :)
I'm so sorry you deal with all this too. I can't wear my AFOs anymore because the whole growing 5 inches at 22 that I mentioned in my previous comment to you. Delayed puberty and delayed skeletal growth is annoying lol I hope that the longer you are in your braces that you become more confident with them like you are with the ring splints. Hang in there and don't give up! Hugs 💜💞💜
thanks! yeah ive worn my afos for 2 years now an im wearing a kafo on my right leg as of febuary. i might be fitted for a kafo for my left foot soon since im loosing more mobility and having a lot more dislocations and sublacotions. have you heard of " Inspire" its a website for rare diaseases like EDS ( which is coming more aware of in the medical feild but not fast enough haha. ~ take one day at a time, is my modo :)
+MsRespect247 no I havent heard of it! I will have to look it up! I tend to be in my wheelchair most the time so it's kept the bracing to a minimum. I also just can't find a good prosthetist around me. Hugs 💜
I have EDS too and my legs turn in too, I also have a collapsing arch and one hip is higher than the other. I just got sent to see a specialist to see if I needed AFOs
I have a kafo brace for my left leg and afo for right I wear answer2 orthotic Velcro shoes I order from orthotic shop they were 140.00 I wish I would’ve went to Payless I’ll definitely go there next time I need shoes
I have to ware a afo on my right food due to having cancer/the surgery removein the tumor from my leg which caused me to have a drop foot and a lot of nerve damage. do you get pain in the ball of your foot after warring them to long? I get a very painful burning pain on the ball of my foot(right under my toes) do you have any suggestions I could do to help prevent this pain?
RissaRae I'm sorry to hear about your health problems. I hope you find some good treatment to get you as healthy as possible! And no I don't deal with that. I did get pain in my heel and needed more padding. Maybe you just need some cushioning so the plastic isn't pushing so hard into your nerves. Good luck 💜
Hi! I have hEDS with Vascular crossover and my hips turn my feet inwards really bad because of my spinal fusion t3-l3 from Scoliosis and it made my hips all wonky. I’ve done physical therapy and the physiotherapist has no ideas what EDS is. My pigeon feet haven’t improved. I’m going back to my spinal surgeon and he’s going to look at my hips and back to see about it all. Do you think he would be able to refer to orthotics at all? I just want to speak to them to see if I need anything or not. I just want the pain and dislocations from the turn-ins to stop, they hurt really bad. I’m 12 and have been diagnosed for a few years but I don’t feel like im getting better at all
Hello, I just have to ask do you live in Missouri? I heard that's where you got the braes and I'm just curious, would you mind doing a video on you mobility aids? It'd be greatly appreciated!
Mia if you do I would love to meet you! It is always so exciting meeting people who understand are go through the same things. You can follow my EDS page on FB if you would like and we can chat on there! :) facebook.com/LoveZebrasAndEDS?ref=hl
Yay! PS. if you have liked my page already you would know this but.... I injured my hip badly on Thursday so I was in hospital all weekend and then I have many many doctors appointments coming up. So your video request may be a little while before I get to it but I haven't forgotten!! It is on a list! :)
Hi I would love your advice I getting casted for them tomorrow they are my first ones I know they will help but it a little bit scary I have the same condition as your Brother. 13 years later I still don’t know how to write the name of the condition so I just call it CP.😂😂 you’re an inspiration.
I may also finally go in September or October to the hospital for more testing, the think I have also eds and know I did not know what to expect ☺️ can you maybe explain in a video how the studies go in the hospital and so on? Thank you. Greetings from the Netherlands Kristel
Hey there, sorry to hear about so much of your pain, but could you possibly do a segment on the neck and what works best to relieve that neck pain, I've tried chiropractic and physical therapy, but at this point nothing is working and I think my neck needs rest most of all. Do you wear anything to support the cervical spine? And if you do, how would you go about acquiring one. My doctors believe I have EDS but are unsure as well like your past stories, and I need advice, the neck pain is bad, and headaches are consistent
+Austin Cockell Hey! I don't have great ideas to help with neck pain as that is one of the biggest things I am still really struggling with and it is actually getting worse. I have a soft collar and an Aspen Vista hard collar neck brace. My soft collar was ordered by my doctor but they have them at Walgreens. I started out wearing the soft collar only when I was having a bad pain day or my head felt heavy. I now wear it rather frequently in the house and I HAVE to wear it EVERY TIME I am riding in a car since I can no longer hold my head up on my own in the car. I used to get awful migraines and puke just from the 4 minute drive to walmart! It has helped so much!! Then I have my Aspen Vista Hard Collar. I ordered it off Amazon! My doctors didn't really understand the trouble I am having and I knew that I needed it. It gives me more support for my really bad days. I can also change the height of the collar because it is adjustable so I can change the level of support it gives me. I use it when I have injured my neck. Like this summer I accidentally stood up and slammed my head on a slanted cieling. I gave myself a horrible concussion and whiplash! It was my 6th diagnosed concussion plus 4 more undiagnosed ones. Yeah I get hurt alot lol. But I wore it every single day for about a month and a half until my neck healed. I am now working on getting an Upright MRI and finding a Neurologist to help get a proper diagnosis of CranioCervical Instability, Chiari, and High CSF + Leak. And then have them fix those things.......... I hope you get some answers and some help soon! I hope I was helpful! Go ahead and check out my facebook page if you havent already it is called "Love, Zebras, and Ehlers Danlos Syndrome". I check it daily. I rarely check my youtube. Hugs
I was just diagnosed with EDS type 3 and I feel that AFOs would help me more than the custom orthotics my Orthopaedic Surgeon though would help before diagnosis. Thing is my ankles turn out, not in. I do twist them frequently and I have bad problems with my knees. I feel this would alleviate some of the pain off my knees and help me not twist my ankle, walk correctly, and not get as much foot pain. Basically I am trying to find new ways to manage the pain. I am speaking with my primary care on Moday, so my question is how would I bring up this topic and what questions should I ask him?
afos can be designed to help in all kinds of ways. so if your foot turns out they can help still. with eds I've learned to speak up on the technology you think that will benifit you an help you stay with you regular basis schedule. it's best to fight to get it now then to wait to late a loose more modility. but eds is still being researched so not all doctor are willing to be flexible, finding the right team is really important especially if they're willing to listen an try supports that you recommend. best of wishes in your fight with eds. to one zebra to the next I support you an hope you stay strong!!! I'm a zebra fighter as well! !
Hi, Cheyenne! I just came across this vid. I wear AFOs too; mine are for toe walking. I do have a short leg too. I have been trying to find a lift for my shoe. Is your lift a heel lift or is it more full size? I’m struggling to find something that works; my pelvis is very tilted; I can’t walk properly, hence toe walking; and my hips and sacrum are quite hypermobile and pop in and out. I was a ballet/Irish dancer, so I do have amazing flexibility and foot strength. Just curious about your lift. Have a great day!
Hi there! My orthotist made the shoe lift. I have since switched prosthetics companies and had my AFO’s redone and don’t use the lift anymore. It didn’t actually help and turned out my SI joint is actually dislocating and twisting causing the discrepancy in length. So when I get it back in my legs are the same length..... I hope you find something that works for you! 💜🦓💜
No problem! The wrist braces might be a little bit. We are still in the process of figuring out what will work for me. I keep taking the custom molded ones off and my other braces don't support my fingers. Once we get it figured out I will make a video for sure :) ... I don't want to give information on things I am not sure about yet lol
Thank you for replying! I didn't think about the long sock lol. I am hoping to get something like this soon. My ankles sublux and dislocate all the time :/cheyenne love
I hope you can get some. If you have little feet like I do look for the socks in the little kids. THey have the most fun colors and designs. It is also usually the cheapest! Hugs
Hey Chey! I can't wait until I can ACTUALLY FULLY watch this video! I use my cellphone for internet access and for the first time in months I actually used up all my good data! So basically thats kinda like my RUclips is broken for about a week :(
But your video will certainly be one at the top of my list to catch up on!:)
Thanks for posting a new one! :)
P.s. I did hear u say you tried the shoe lift, I can totally relate. I tried that in 2009 and just couldn't tolerate them, for me they made the pain all the more extreme.
I am a zebra fighter as well!!! along with all the dislocations that i deal with everyday, 2 years ago I had a serious dislocation in my back that caused paraplegic issues as I gained me left leg back I still have drop foot on the left side an my right leg is paralyzed still so I have to wear a afo (ankles foot orthotic ) on the left and a kafo (knee ankle foot orthotic ) on the right. I also have the silver ring splints. An wake up to at least 4 to 7 (if not more) dislocations every morning an have more during the day. it sucks. from a zebra fighter to the next my support goes out to you and I love you videos about EDS!!! STAY STRONG :)
I also have a uneven pelvis that makes my right leg a 5 inch difference.
+MsRespect247 a 5 inch difference?? Wow !
I'm so sorry you deal with all this too. I can't wear my AFOs anymore because the whole growing 5 inches at 22 that I mentioned in my previous comment to you. Delayed puberty and delayed skeletal growth is annoying lol I hope that the longer you are in your braces that you become more confident with them like you are with the ring splints. Hang in there and don't give up! Hugs 💜💞💜
thanks! yeah ive worn my afos for 2 years now an im wearing a kafo on my right leg as of febuary. i might be fitted for a kafo for my left foot soon since im loosing more mobility and having a lot more dislocations and sublacotions. have you heard of " Inspire" its a website for rare diaseases like EDS ( which is coming more aware of in the medical feild but not fast enough haha. ~ take one day at a time, is my modo :)
+MsRespect247 no I havent heard of it! I will have to look it up! I tend to be in my wheelchair most the time so it's kept the bracing to a minimum. I also just can't find a good prosthetist around me. Hugs 💜
I have EDS too and my legs turn in too, I also have a collapsing arch and one hip is higher than the other. I just got sent to see a specialist to see if I needed AFOs
Hallo, thanks for playing a video about it.
Sorry you're going through so many difficulties. I too have EDS.
Hang in there 🌈
PS). The word is prescription 😉
hi Cheyenne I have a left wrist I can tough my left thumb to my left arm just below my wrist I have had since I was born I could do that
I have a kafo brace for my left leg and afo for right I wear answer2 orthotic Velcro shoes I order from orthotic shop they were 140.00 I wish I would’ve went to Payless I’ll definitely go there next time I need shoes
I got purple with black straps almost a yr ago
I have to ware a afo on my right food due to having cancer/the surgery removein the tumor from my leg which caused me to have a drop foot and a lot of nerve damage. do you get pain in the ball of your foot after warring them to long? I get a very painful burning pain on the ball of my foot(right under my toes) do you have any suggestions I could do to help prevent this pain?
RissaRae I'm sorry to hear about your health problems. I hope you find some good treatment to get you as healthy as possible! And no I don't deal with that. I did get pain in my heel and needed more padding. Maybe you just need some cushioning so the plastic isn't pushing so hard into your nerves. Good luck 💜
Hi! I have hEDS with Vascular crossover and my hips turn my feet inwards really bad because of my spinal fusion t3-l3 from Scoliosis and it made my hips all wonky.
I’ve done physical therapy and the physiotherapist has no ideas what EDS is. My pigeon feet haven’t improved.
I’m going back to my spinal surgeon and he’s going to look at my hips and back to see about it all. Do you think he would be able to refer to orthotics at all? I just want to speak to them to see if I need anything or not. I just want the pain and dislocations from the turn-ins to stop, they hurt really bad. I’m 12 and have been diagnosed for a few years but I don’t feel like im getting better at all
How does this help as far as the in toeing and knee and hip issues if i may ask?
How far do you lock or hyper extend your knees when you walk also?
Hello, I just have to ask do you live in Missouri? I heard that's where you got the braes and I'm just curious, would you mind doing a video on you mobility aids? It'd be greatly appreciated!
Yes! I live right outside of Springfield! Do you live in Missouri Mia? I would love to do a mobility and life style aids video! :)
cheyenne love yes! I live in excelsior springs, and am moving soon, probably around the spring field area! How neat!
Mia if you do I would love to meet you! It is always so exciting meeting people who understand are go through the same things. You can follow my EDS page on FB if you would like and we can chat on there! :)
facebook.com/LoveZebrasAndEDS?ref=hl
Cool! And yes, it is very nice to meet people who understand what you are going through. I will certainly like your page!
Yay! PS. if you have liked my page already you would know this but.... I injured my hip badly on Thursday so I was in hospital all weekend and then I have many many doctors appointments coming up. So your video request may be a little while before I get to it but I haven't forgotten!! It is on a list! :)
Hi I would love your advice I getting casted for them tomorrow they are my first ones I know they will help but it a little bit scary I have the same condition as your Brother. 13 years later I still don’t know how to write the name of the condition so I just call it CP.😂😂 you’re an inspiration.
I may also finally go in September or October to the hospital for more testing, the think I have also eds and know I did not know what to expect ☺️ can you maybe explain in a video how the studies go in the hospital and so on? Thank you.
Greetings from the Netherlands Kristel
Hey there, sorry to hear about so much of your pain, but could you possibly do a segment on the neck and what works best to relieve that neck pain, I've tried chiropractic and physical therapy, but at this point nothing is working and I think my neck needs rest most of all. Do you wear anything to support the cervical spine? And if you do, how would you go about acquiring one. My doctors believe I have EDS but are unsure as well like your past stories, and I need advice, the neck pain is bad, and headaches are consistent
+Austin Cockell Hey! I don't have great ideas to help with neck pain as that is one of the biggest things I am still really struggling with and it is actually getting worse. I have a soft collar and an Aspen Vista hard collar neck brace. My soft collar was ordered by my doctor but they have them at Walgreens. I started out wearing the soft collar only when I was having a bad pain day or my head felt heavy. I now wear it rather frequently in the house and I HAVE to wear it EVERY TIME I am riding in a car since I can no longer hold my head up on my own in the car. I used to get awful migraines and puke just from the 4 minute drive to walmart! It has helped so much!! Then I have my Aspen Vista Hard Collar. I ordered it off Amazon! My doctors didn't really understand the trouble I am having and I knew that I needed it. It gives me more support for my really bad days. I can also change the height of the collar because it is adjustable so I can change the level of support it gives me. I use it when I have injured my neck. Like this summer I accidentally stood up and slammed my head on a slanted cieling. I gave myself a horrible concussion and whiplash! It was my 6th diagnosed concussion plus 4 more undiagnosed ones. Yeah I get hurt alot lol. But I wore it every single day for about a month and a half until my neck healed. I am now working on getting an Upright MRI and finding a Neurologist to help get a proper diagnosis of CranioCervical Instability, Chiari, and High CSF + Leak. And then have them fix those things.......... I hope you get some answers and some help soon! I hope I was helpful! Go ahead and check out my facebook page if you havent already it is called "Love, Zebras, and Ehlers Danlos Syndrome". I check it daily. I rarely check my youtube. Hugs
I was just diagnosed with EDS type 3 and I feel that AFOs would help me more than the custom orthotics my Orthopaedic Surgeon though would help before diagnosis. Thing is my ankles turn out, not in. I do twist them frequently and I have bad problems with my knees. I feel this would alleviate some of the pain off my knees and help me not twist my ankle, walk correctly, and not get as much foot pain. Basically I am trying to find new ways to manage the pain. I am speaking with my primary care on Moday, so my question is how would I bring up this topic and what questions should I ask him?
afos can be designed to help in all kinds of ways. so if your foot turns out they can help still. with eds I've learned to speak up on the technology you think that will benifit you an help you stay with you regular basis schedule. it's best to fight to get it now then to wait to late a loose more modility. but eds is still being researched so not all doctor are willing to be flexible, finding the right team is really important especially if they're willing to listen an try supports that you recommend. best of wishes in your fight with eds. to one zebra to the next I support you an hope you stay strong!!! I'm a zebra fighter as well! !
I had blue AFOs! Thats close to purple
Hi, Cheyenne! I just came across this vid. I wear AFOs too; mine are for toe walking. I do have a short leg too. I have been trying to find a lift for my shoe. Is your lift a heel lift or is it more full size? I’m struggling to find something that works; my pelvis is very tilted; I can’t walk properly, hence toe walking; and my hips and sacrum are quite hypermobile and pop in and out. I was a ballet/Irish dancer, so I do have amazing flexibility and foot strength. Just curious about your lift. Have a great day!
Hi there! My orthotist made the shoe lift. I have since switched prosthetics companies and had my AFO’s redone and don’t use the lift anymore. It didn’t actually help and turned out my SI joint is actually dislocating and twisting causing the discrepancy in length. So when I get it back in my legs are the same length..... I hope you find something that works for you! 💜🦓💜
I did find a lift on Amazon that works with my AFOs. It does save my back. Yay!
Thank you for doing this video :)
Can you please do a video on your wrist braces you wear to bed.
No problem! The wrist braces might be a little bit. We are still in the process of figuring out what will work for me. I keep taking the custom molded ones off and my other braces don't support my fingers. Once we get it figured out I will make a video for sure :) ... I don't want to give information on things I am not sure about yet lol
Does the plastic rub against your legs and irritate them?
Nope not at all. I do wear long socks that go to my knee's all the way to my knee's. If I don't wear socks it is uncomfortable.
Thank you for replying! I didn't think about the long sock lol. I am hoping to get something like this soon. My ankles sublux and dislocate all the time :/cheyenne love
I hope you can get some. If you have little feet like I do look for the socks in the little kids. THey have the most fun colors and designs. It is also usually the cheapest! Hugs
Skript
Can you please do a video on your wrist braces you wear to bed.