I want to offer sincere gratitude to the maker of this video! I live in what feels like the least informed portion of the US regarding EDS and have spent the last 19yrs independently seeking out physician's who could offer aid to my body as it's fallen apart. I've been ridiculed, and made fun of by medical professionals and told it was impossible for my spine to become unstable; while suffering well past inhuman pain levels. Through your articulation of the specific tests necessary for proving instability exists; you may have just helped save my life. I've just begun what I intend to be a series. Its called Ehlers Danlos (Living the Fight). I hope I can impart my years of wisdom to others through what I've lived; even half as beautifully as you have here. I genuinely appropriate you🌸
Hey I have lost 3 years of my life living in unimaginable pain due to spinal instability issues and my parents never really took me to major doctors. I have isolated myself for so long and yeah people say I'm lazy,lying,exaggerating and stuff. Yet I have to go to college and get humiliate often for not paying concentration,and not studying well
I don't have EDS but I know how awful it is to have anything wrong with your spine. My fusions helped greatly but it took 7 years of pain and complications before I was approved for surgery. My advice is stay positive and fight for the treatment you need.
My neurosurgeon is holding off on surgery because I'm so young & the fusion would disable me since they need to go down to my C5. I've been in constant pain for the last 4 years. I don't want to become disabled, but I desperately want relief.
Well said Christina. I have cervical instability and mild scoliosis. I have a constant headache and frequent ear ringing. I have started wearing a soft cervical collar in the car and when I have to look down for any length of time, and it has helped a lot with the pain. I didn't realize until seeing this video that my frequent ear ringing and double vision are probably symptoms as well. I should have realized about the double vision on my own, because it gets much worse when I have been bending my neck quite a bit. Thank you for the information, Christina.
I have had a headache for over two years now. No pause, just varying degrees of headache and migraines. Last week my doctor suggested exactly this, that my spine is too flexible. I have an appointment with a physiotherapist today for examination and to start a "live-with-pain" treatment/education. My spine feels like a Z, my neck is tilting forwards, and my back has started to "fold" out where the band of my bra sits on the back and then it folds forward again about where my waist is. Also I have a light tilt to my right. It is painful at times, my shoulders get a wierd angle and are starting to misbehave and that is then disturbing elbows and hands. My hips and knees are starting to act up too and my ankles of course. It feels like my body is giving up slowly but surely. EDS sucks at times ...most times actually. Thank you for sharing your story so that we that don't share ours as much can learn and not feel like such a circus freak. Much love to you and healing thoughts to you friend ❤
+Linda-Marie Hamrin Im so sorry to hear that Linda! I can really relate. Everything is so connected that when one thing is off its pulls everything else off. Best of luck in your physio appointment. You will be in my thoughts and prayers! I hope you are able to get some relief and build back some strength 💕
Christina Doherty Thank you, thank you, thank you ❤ It went ok. Nothing is out of place and that's good I guess. Going to try exercise in water and see how that goes.
Look up the 2017 Conference on the Ehlers Danlos Society website...there is a slide presentation on pain strategies for EDS that is full of good advice and recommendations for things that can help.
your the first person ive found who goves me hope for my self. growing up i was a martial artist and very active person until the last 5 or so years. i still do what i can but living with minimal medical help is honestly my downfall. its financially ruined me because of the inability to work and the fact that i hve no help. drained every dollr ive saved just to survive the last few years. none of my doctors have ever been able to pinpoint any of the many symptoms i live with and ive gone incorrectly treated for years. they just threw opiates at me and said good luck. whats said is they have been the only saving grace but its not a fix just a mask. i beg them to help find a solution they then say that im mentally unstable for trying to be human with them. its wild its sad and honesty criminal. i went yo get a massage and the person giving me it was very talkative but about my body and asking alot of personal questions more than all my doctors combined have ever done collectively. by the end of the massage she asked if i minded if she gave me some advice on where to start. i told her ill gladly listen and to go ahead. she asked one more question then and it was what was my age. she told me to go see a few types of doctor to check it out and to try and start from there. she left the room i changed and she came back to walk me out. before walking out she grabbed my hands and stared i to my eyes. she told me to try and get the ball rolling the faster the better. she then told me her reasoning. her daughter who would have been my age passed away 2 years earlier from it. she then told me that its been years since she had to help adjust her daughters body and that i was the first person since her daughters passing that she had crossed paths with whos body and bones moved in the same way. she then directed me to some websites so i myself could investigate and so on. She had given me hope that i finally was not crazy and that i was sick. it was the doctors i had seen who were the real problem of my life. but even after any foctors i try to find deter me from wanting to try again to get help. ive also found alot of dental work had caused alot of my necks issues. i can move and manipulate literally every part of my body. my face and cheeks and jaw even my ears shift around on my head, but also my back neck shoulders arms legs hips fingers toes and the worst is pelvic are depending it can stop me from being able to go to the bathroom let alone restricts blood flow to my male area lol even though its far from funny. but on top of all of it. my family thinks its al made up because the doctors from my past. i cant take care of myself but im expected to be my father with Parkinson’s caregiver aswell. whats worse is his family had the money to help. they are prt of the worlds id say top 10% and they do nothing. they tell me i need to go back to work full time i aay id love to but nobody keeps me because of the limitations from my body. i get hired but im always let go because of having to adjust my body while working. from that ive lost insurance and am on medicade and i cant find a doctor whos covered and i cannot afford to see one who is not is the sad reality of it. i wouldnt wish it upon anyone. its wild to not fear death but to embrace the idea of no more pain in order to not be scared of it. sadly i enjoy living too much to want to end my suffering. a wild thought ive had was what if i could live in space would it allow my body to decompress without gravity. i literaly feel like i fight gravity all day. reguardless thank you for all of your time and effort into your videos and journey. i love that your open and honest so that people can genuinely understand it i hope my family finally will
you have become my fave go to youtuber for EDS. i need to learn so much and you explain it so well.thanks for your advocacy. im in the begining of my eds journey and ive been ill for over 11yrs.it took one total knee replacement to realize whats really going on with me.
I don't have EDS (I had thyroid cancer) and after one of my neck surgeries I had a neck brace for two weeks. It's *so* crazy how dependent you get on them! I remember getting in a car a few days after my brace came off, and when someone accelerated too hard my head would go flinging back!
+Thyroidless Lex So relatable! I have basically been in and out of the neckbrace (more so in) for the last few years and ,I tell ya, instill feel like a bit of a bobblehead now 😂
Oh wow, when you said flexion and extension on the upright MRI I started crying. I am undiagnosed and going to start seeing doctors in January. I can literally rest my head on my upper back when I bend my neck backwards. I have to do it slowly now because of all the grinding and pain. My neck is ridiculous. Would I have to stay that way for the imaging? That is so scary!
Is it not normal for the head to touch the upper back??? When you bend back as much as possible? I can do this but I don’t know about having spinal instability
I had a lying down mri for my spine. Was totally pointless though as my issues are with standing. Same with possible prolapse they worse on standing but they do tests lying down 😂
What kind of doctor would you recommend seeing, as an EDS patient who is showing symptoms of possible spinal instability? I don't know if my insurance would let me go straight to a neurosurgeon to consult with for testing, but maybe they would. I guess a doctor with the term "surgeon" attached just scares me a little. Thanks for being so open and approachable :)
I'm so at a loss of what to do with my own issues. My spine has been out of place for years, I've always readjusted it myself. More and more I crunch all the time. I am constantly moving my ribs, spine, shoulder and collarbone. I can't even afford a doctor. I am so glad to hear it worked out for you so well. The thought of fusion makes me panic, I know I move too much but what if you can't move enough? When does disability come into play does it ever?
+Geszelda Honestly? Losing the motion is difficult but to me it was worth it. I wouldn't be alive without it. But everyone is different and everyone puts different value on certain things. As far as disability I would be disabled spinal fusion of not. If you are asking more about benefits then yes I am considered disabled and unable to work by the state.
Christina Doherty I'd love to hear about your battle for disability through the state. I hear it can be very expensive. Eventually I'm going to have to do that, I can warm people all I want but it's all fun and games until I dislocate something at work -__-
My experience was actually very easy. I was immediately accepted. I may make a video on it on the future but I will need to talk to others about their experiences as well. I know that some people are denied because EDS isn't always considered a disability which is crazy. I guess I was just "lucky" to have so many documented complications that are a bit more mainstream.
Brilliantly explained. Am having symptoms of this myself as a recently diagnosed EDS person. Been v ill for twenty years but EDS never mentioned once by medics only considered by ME!! Lol. Anyway I am in a collar out of my choosing and right now the headache is gone and shifted down to my lower spine. Is that a good or bad sign? I love your videos. Your positivity in the face of this problem always lifts me and I wish I lived in your country. I am in the U.K. we are not anywhere near as understanding of the condition here. I would love to meet up with you. No chance 😔 bless you hon. Keep it up. X
+Man Ape Thank you! My advice is to not Put it off. You don’t want to wait until you cannot bear it and then have to go start the whole waiting and imaging process when you are desperate💕
I have Marfans not Eds but many of the spinal, ortho and joint issues can be similar so I relate to some things more than others. Anyway thanks for posting it helps!1
My discs are all rupturing in my lumbar I've been through four years of MRI ctscans xrays phys therapy... Faccett injections pills epidurals....I'm desperate for relief any advice ?
What a great video! Im still struggling with how to explain EDS to anyone. The syndrom is so full of things that people wont ear about it cos it is too long to explain. I just say i dyslocate myself. I would love to reach your force to explaining it in such calmed way
+AngelinaDisole Haha well it’s definitely still a bit tricky to explain when people ask questions out in public. You have to choose between a long story but maybe raising some awareness or saying “Oh I just had surgery”
It has been suggested that I have EDS/hypermobility, I have personally looked at the beighton score and have 8 of the 9 (if my muscles weren't so tight it would probably be 9 of 9). I am going to be talking to my doctor tomorrow about it since I haven't seen him since EDS was mentioned. I have had constant subluxations of my knees, hips, thoracic spine, and neck since I was 12. The worst is my neck and upper back. I am supposed to be having a spinal fusion on c5-c7 in the next month or so. The surgeon has 16 years of experience with these surgeries, but my worry is that since I possibly have EDS there could be issues down the road. I can't avoid having the fusion because I have spinal stenosis and two herniated discs in the same area. My pain and symptoms have only stayed the same or gotten worse since it all flared up in November last year. I just wanted to also say thank you for putting your story out there and bringing awareness to EDS.
I actually have to wear a full back brace right now and I can't wear it when I go to sleep at night and when I wake up it's very difficult to get out of bed we joke around that I Turtle if I fall over in my back brace and have to get help up,
+Dawn Keith Avon So relatable! I named my back brace Beetle because it was a hard shell and when I laid down I couldn't get up 😂. May I ask why you can't wear it to sleep? I found that that was the most important time to wear it
may i ask who your CCI surgeon was? i was diagnosed w CCI, chiari in may and i've had a eds diagnosis for a while. we've seen a array of surgeons many of which are eds and cci specialist but we have gotten so many diffrent opinions we just don't know where to go from here yet.
When I passed an X-Ray for the total spine, trying to find WHY and WHAT is happening in my spine, the technician make me be on my back on the table but when she begun to say : your right shoulders to low, she replace it; your pelvis is crook, she replace it! I told her : I am like this and you place me like you put the meat, the small peas and potatoes in the plate but that's not me!! I t took 12 years to find the problem ! Now I know : it's instable and the vertebrae are trying to fusion. But when it's all not straight, the fusion is worst!
+Angeline McKay Rintoul The best is if you can see a neurosurgeon who is familiar with connective tissue disorders. Unfortunately these kind of surgeons are few and far between. Plus they have very booked schedules. The second best would be at least to get in to see a local neurosurgeon who is willing to listen/learn and can order testing. Usually an upright MRI flexion and extension (bending forward and back) scans is used to diagnose instability. If you don't have upright MRIs nearby then a regular flex/ex one may still be helpful. Ive got to say though, if something does show up on the imaging needing attention, I would really recommend pursuing an EDS knowledgeable surgeon. Surgery is very complex im us. 💜
Christina Doherty thank you! I think my thoracic surgeon (I see him tomorrow!) may be able to help get me to see the appropriate neurosurgeon.. He's already put in a referal before I got the results from the geneticist, though they haven't called me yet. I have just been diagnosed with EDS after first basically diagnosing myself. You have helped me to explain the symptoms I am having. Just waiting on results of one blood test (to rule out vascular type I guess and I'm now hoping I may finally be able to get some relief. I'm not doing well physically and sometimes I just feel like I can't take it anymore. But I feel hopeful watching you.. seeing that there may be ways the doctors can help me after so much struggle, pain, and suffering. Now the doctors are finally hearing me and I'm about to embark on my own EDS journey! Thank you for sharing your story. Maybe I can gain the strength to be there one day too😂
Well said Christina!! I really are well versed in your/our illness. It's amazing to think of your TEN spinal surgeries! Before I was sick (CRPS of course I've always had EDS and didn't know it) I worked in a hospital that did spinal surgeries of many types. The thing about it is the RECOVERY! Like you said the spine effects everything in some way. I took care of many of these patients and had such a heart for them And for you of course. I'm glad now at least your spine is secure!!
+Melissa Thomas You aren't kidding! Lol Recovery is NOT easy. Its amazing how much it affects. Even now almost a year later my body is still relearning how to do almost everything.
this video is so helpful!! spinal instability has only started affecting me "recently" (a relative term for spoonies lol) and my dr has suggested trying a chiropractor first along w continuing my pt regimen. do you have any experience/opinion on chiropractic care for eds spinal instability? i know a lot of eds-ers are either very pro or very anti. (also side note: i've watched your videos for a while now and i've loved seeing someone's take on daily life w our shared illnesses. they've inspired me to start my own channel and be brave enough to feature my chronic illnesses in my videos so i just wanted to thank you for that!! sending you lots of spoons💕 🥄)
Haven't watched the video yet cause I'm high but I noticed you have the finger splints. My sister also has EDS and we often have weed together and it helps with her, so I just noticed the finger splints. Anyway, I have a question. Do you ever just look at splints for fingers and think "These are like rings, I should find some fancy ones!"?
I also have spinal instability. My upper back pain is killing me.. it hurts so bad, that I have to lie in bed all day. It makes me so sad. But no doctor wants to help me. I have heard about dr Gilete in Barcelona, but my specialist won't send me there because he thinks the problems will only move to another location. I actually feel like me life is over, as I experienced this unbearable pain for over 3 years now.
Hey! This is such a helpful and informative video! I was wondering if you have advice on distinguishing spinal instability from other conditions that go along with EDS. I have a lot of the symptoms that you mentioned, but they've always been attributed to other things (POTS for vertigo, loss of balance, nausea, and brain fog. Atypical migraines for numbness, inability to speak, and blurry vision.) Thank you so much! 💕
+idon'tknowwhati'mdoing Thats a really difficult one... We tend to have so many different things going on at once and a lot of them can have overlapping symptoms. I guess that the best way to discern if you are dealing with instability is to see if your symptoms improve with stability. So usually bracing is the way to go with that. Obviously I would recommend doing that under the care of a surgeon who is also investigating it with imaging. After my first appointment with my surgeon he gave me a hard collar neck brace to try and by the time I even got to the car in his parking lot I know I felt better.
My c1 c2 is hypermobile. Basic Mri showed nothing at c1. Cervical curve lost and herniations. Tried ozone injections into neck. Very painful with no results..accupuncture. chiropractor. Osteopath. Very scared of surgery. Neurosurgeon prescribed diazapam. I'm constantly having to put my c1 in place. Wake up with vertigo and all sorts of wacky symptoms. I think i need a DMX and possible fusion. How much longer can i stay like this???😪
Do you know if a hypermobile EDS patient with rounded shoulders and forward neck posture positioning can eventually be headed for some type of spinal instability?
This was very informational. I have EDS and with that of course horrible scoliosis (it hurts and looks horrible but isn't a risk according to my last doctor visit) I go back very soon and have been anxious; if my spine has worsened or changed, I may need surgery to correct it. If it hasn't my doctor may out me in bracing but I'm afraid that would hurt my ribs as they've been subluxating more frequently as of the past two weeks. (My parents rarely listen to my concerns because it's not been bad in the past but has been negatively escalating in recent months.) Do you have any suggestions as what I should to calm my nerves or maybe enlighten the situation? If it helps I've known I've had EDS all my life and am currently 17, due to recent events (in March) my EDS has taken a down turn and I've accepted it as that.
+Lacey Barron Im really sorry to hear that you are struggling so much with this. Im not surprised you are having rib issues with the scoliosis. Everything is so connected. I would express this concern to your surgeon if he decides that bracing is your best option. I have had some issues with the ribs in my braces in the past. Although they also sometimes helped to hold them in place. Its all about a brace that fits correctly. And if they decide that surgery is the best route then I'm sure that you will do great! I know it can be really scary to think about, but it can be so wonderful if your symptoms really start to impact your life. My only advice is to make sure if you do have surgery to make sure that your surgeon truly understands EDS and has ruled out some of the other neurological defects (chiari malformation, tethered spinal cord, etc.) that can come with EDS and complicate your case/recovery. 💜
Thanks for this video, I shared it to my Twitter because it affects me a lot as well. I have mild scoliosis and thus I have some significant back pain. That was actually my first pain related symptom for me. I haven't had any bracing, and I still haven't been prescribed any medications for any of my symptoms, I'm just doing physical therapy. Which type of doctor would you recommend going to have this test done? Having so many surgeries would be very hard on me so I hope I don't have to go that route but you seem to be doing so well. Thanks for the great videos!
+Josh Hittie To investigate spinal instability/cord compression you are going to want to see a neurosurgeon. Even if you don't want to go the surgery route. 💕
I have EDS and my pain doctor recommended that I have my tailbone fused with my lowest lumbar bone. I have a referral to a doctor 60 miles away in San Antonio. What should I look for when meeting this doctor? I saw that you recommended a flexion and extension MRI. I have a pacemaker, so I can’t have an MRI. Any recommendations? Thanks ❤️
My spine is awful but unfortunately as I live in the UK I have to rely on the NHS to provide me all my care and treatment for my EDS and the NHS won't do anything for my spinal instability as we don't have any specialists that have experience dealing with Spinal Instability as a result from EDS, I get told all the time that I am "far too complex" for any doctors to treat me at any hospital. Believe me I've tried many hospitals and I get discharged on my first initial outpatient appointment.
+POTSy Buni I am so sorry! This is something that I hear quite often. I even met a few girls who have had to travel from the UK to have treatment here. Its really unfair and I wish I had a better answer 💕
POTSy Buni NHS both a blessing and a curse. I've had same issues with being discharged or being told it is my normal and to basically get used to it lol
I in the UK too, I pay privately to see a chiropractor, if not my back just gets worse and worse, the pain never stops, but seeing the chiropractor seems to sort of re set, kind of like a video game. It never completely gets rid of the pain, sometimes I feel worse after it. But the bit of relief is worth it. I definitely get most pain from my back and neck. You can't not use them either, sitting, standing abd lying down all use the spine. It can take me 30 minutes to get out of bed. The eleven steps to the bathroom can take ages too. My doctor will ask how far I can bend, when it's really bad just reaching on a kitchen unit to pick up a mug from just in front of me hurts like hell. So I might be able to bend 10 degrees, my doctor doesn't think that's bad! But my full range of movement is putting my palms flat on the floor. So frustrating
hi POTsy hope you ok 8 months on I had my first experience with trying to get diagnosed in uk today I'm 55 and had never heard of EDS until a few months ago seem to have a lot of symptoms and medical stuff that could have been misdiagnosed ive got terrible spine and neck had bad whiplash and wedge fracture years ago.I took some pages I printed out about eds with me to the gp he just said "oh it cant be that it would have been picked up by now its vey common to have double jointed fingers "
Hi again! :) I'm on my laptop, so I don't have emoticons! Drives me crazy! Quick question: by fusion are you speaking of (sorry for those who are squeemish) cadaver bone fusion? My late Mother-in-Law had Osteoporosis, and towards the end of her life, suffered many fall. She ended up with 5 spinal fractures. She had surgery where they fused her fractures with a type of "bone cement" and I was wondering if that might be an option for EDS patients? I thing there may be an issue with allergies to the type of "cement" they use for EDS patients. Anyway, I was just curious which type of fusion you had, I've known people who have had both. Oh....I may have spoken too soon. You may cover this in your next video. If you do, I'm sorry I jumped the gun. Have a great night!
+Beth Wade I can so relate about the emoticon thing! Sometimes I answer comments on my phone And sometimes on my laptop. And the laptop comments always feel so inadequate 😂 Im honestly a giant mix of fusion types. We chose different methods for different areas and such. But I do have some areas of cadaver bone and bone matrix. I don't think I have any areas with just that though as we decided it wouldn't be enough on its own.
thank you so much for the info, my sister had her back and neck infused at the age of 7 because of something complying diffent then you, but some of the info in your vidoe can be used for her infusen as will. So thanks :-) you gave me a little more insight to her.
im honestly so stressed we dont even have upright mri in canada and so im stuck using flexion extension xrays and then i have to pay out of pocket for american companies to do the readings because radiologists in canada don't do these measurements. The healthcare in canada is absolute trash.
I have very extreme spinal extension (i.e. I can bend backwards and grip my ankles) but I can barely touch the ground bending forwards. Is that normal with EDS patients? I have Classical type, but it's so rare in New Zealand, no doctors can really help me, unfortunately.
Hey I'm also an NZ EDSer. Are you on the Loosely Speaking Ehlers Danlos NZ facebook group? There's a lot of info on there about drs who have decent understanding about EDS. The best from my understanding is Dr Fraser Burling in Auckland. His wife has EDS and he's one of the leading NZ EDS doctors (he also attended the 2017 EDS symposium!). I know there a lot of people in the NZ Ehler Danlos group with Classical Type who've seen him, along with VEDS and HEDS, and some of the rarer types. The only thing is that he's private so it is a bit more expensive, you'll need to travel to Auckland if you don't live there (I'm in the South Island so haven't been up yet), and you'll also need your GP to do a referral. Goodluck!
When I walk I'm manually controlling my back to stay in position all the time and my respiration really affects me all the time I have brain fog,poor concentration etc Please tell me guys should I go to college wearing braces or should I take a year of focus on building my muscles in the back and come back with concentration and the real me
Hi, Christina! How exactly should I go about investigating possible spinal/cervical instability and/or Chiari malformation, like doing the standing MRI you mentioned? Is that something I'd need to talk to my physical therapist about, or my PCP? I'm just not sure who I need to talk to or what kind of specialist I need to see. My physical therapist seems to be my best bet since she's familiar with EDS and explained that since my connective tissue is extra weak, my muscles have to try extra hard to keep my joints in place, but she's only examined my neck and spine visually/by feeling the vertebrae, no scans or anything. Who do I need to see to get an actual scan done so we can check for any issues like spinal cord compression?
+K-Wo Hey there! So the best thing to do would be to get under the care of a neurosurgeon. They can either order the specific types of scans you need or advise your primary on what to order. Unfortunately not all surgeons are created equally when it comes to EDS. There are really only a handful of really good EDS specialists so a lot of us have to do some traveling. Same goes for the upright imaging. There really aren't a lot of facilities that have the equipment to do upright MRIs which is very frustrating. There are a number of facebook support groups that are pretty helpful in finding the right doctor. Feel free to private message me for more info 💕
I found this video searching for a link between EDS and Encephalitis. I've had some test results indicating a problem with my brain. Would you happen to know if this is a common comorbidity with EDS?
i have major spinal instability. they can tell many times without standing. If its bad enough, it shows. i refused fashions. it is not natural & many hurt for life after, so i wont do it cause if it goes wrong, cant fix that. decompression is great. had most mine done on L's and S's. An implant ring is best. Insurance dont always pay cause the ring implant is like 25-35k itself. have to fight the appeal. it helps to stable. my surgery went GREAT, but.. in time, other side went bad, so now facing that.
I've never used tens for that but I can't stand it on my back. To me it feels like if you're using your lips to dampen thread to thread a needle abd get get that weird tickle. I use it all over apart from that though x
+Molly O There are actually quite a few ways, but when the vertebrae are unstable they can very easily dislocate. If you dislocate the vertebrae in your neck, you are pretty much done. Also the instability can push into vital nerves or blood vessels either cutting off oxygen to the brain or cutting off your ability to breathe altogether. These are just a few examples. But it can also cause seizures, strokes, spinal fluid leaks, apnea, and other dangerous complications.
+Mel M If you want more information on that its best if you private message me through my Instagram or personal Facebook. They are always linked below my videos. Its impossible to have a conversation on here ❤️
Hey guys I have eds and it's Rly bad in my knees and I need tip on how to get like idk strongerbut ever time I work out it kills my knees and almost all my joints any one got any tips
Mr & Mrs I'm on a support group for SI issues and someone with EDS explained that they would have to prevent any abnormal movement for the days/weeks the prolo or PRP takes to work. But her joints dislocate/sublux even on the car ride home from prolo so it doesn't work.
thank you so much for the info, my sister had her back and neck infused at the age of 7 because of something complying diffent then you, but some of the info in your vidoe can be used for her infusen as will. So thanks :-) you gave me a little more insight to her.
She is doing ok, she has a bone disease. She had to get her back foused because her spine was going to hit her heart or her liver, so they had to do that. I will not tell all the details lilets just say she is lucky to be alive. Now she had to get her leg brocken in two spots and a rob put in so the brocken legs she has been walikg around on for the last 8 years will healn and it is and she very happy but still in a lot of pain. I tell her every day she is my hero, not because she gone throw so much, but she didi it all while caring for my mother and her boyfriend and very thing, she is the strangest person I know. :-)
