I am a disabled man.
In this post I will describe my vertebral disease (hemivertebrae), and how it affects my life physically and emotionally. I will not be surprised if it will end up with me crying while writing 🙂
Why I create this article
There are 4 main reasons:
- The disability makes me have uncommon behaviors that the people of my life (relatives, friends, colleagues) don’t understand. For me it’s hard to explain them everything by speaking: my condition is complex, articulated, and I have not accepted it to an extent that makes me comfortable to discuss it openly. I think that a written article is the best I can do: from now on, if I need to let someone know, I can say “go here and read”.
- I want to share my story for someone who could be in a similar situation. I didn’t find much about hemivertebrae in internet, that was really depressing at the beginning. When I started searching I found information saying that this disease is typical of dogs…! I felt like a circus freak, and bad. Instead I know now that there are many people in the same situation: I am writing for you. I will give the article a sort of medical direction, other than personal.
- The issue caused and causes me pain. A considerable part of this pain is emotional: I have cried many times, I have been nervous, frustrated. I think that writing on the subject could help me relieve the emotional discomfort.
- My disease is not an evident one, so people that are not good observers usually ignore that I live with it. It’s my job to tell them, to let them know who I really am. And possibly give them a chance to love me even if I am so “out of standard”.
Hemivertebrae C6
Ok, let’s see what my condition is. Here is the image of a regular spine, composed of a pile of vertebrae. In normal conditions, vertebrae are cylinder-shaped. They start at the bottom of the spine, close to the sacrum, and go up along the back and the neck until they reach the cranium.
Unfortunately, some of my vertebrae decided that this configuration was too banal. In particular those in the region of the neck, which is my critical area. The lead actor of the story is C6.
For many C6 is a regular cylinder-shaped vertebrae at the base of the neck. But for me C6 is smaller than usual, and is triangle-shaped. As the name hemivertebrae suggests, it’s half of what a vertebrae should be. I researched for a while in the web, and the explanation I usually found is that this disease is congenital. Hemivertebrae developed when I was just a fetus, and the oxygenation of C6 wasn’t sufficient to allow it a full development.
This is an image of the front of my neck taken 2 years ago. I have others but this is very good. I must say it’s a shock for me to see it, every time. I usually do the exams, take a quick look at the results and archive them with a feeling of sadness and rejection.
As you can see the presence of C6 caused a severe curve. The other cylinders found a way, a characteristic way, to adapt to the presence of the freak. Diagnosis talk about cervical scoliosis, which is quite uncharacteristic. It’s very localized. My spine is straight from the middle down, but very curvy in the trapezes area. Usually the curves related to a scoliosis due to hemivertebrae are wider, because hemivertebrae happen much more frequently in the lumbo-dorsal area.
This is THE problem. That cause the following
Consequences
- First of all, C6 caused anomalies in other vertebrae in the surroundings. Two that have been significantly impacted are C1 and C2, at the junction between the spine and the cranium. They arrive with an unnatural angle, so with time they have morphed to survive in this situation. C1 has fused partially with the occiput, C2 and C3 are fused together, all the others have various degrees of malformation. The craniospinal hinge is a total mess. I always feel frictions and noises there. An old doctor once said “I’ve never seen anything like that”. I let you imagine how I felt when I heard it.
I lost the physiological curve of the neck, it is too straight. That is not a rare condition though. 
- Acromio-clavicular joint separation. This is a problem in a distant place. The altered balance of the spine, due the center moved to the left, caused a stretch in the ligament between the acromion and the clavicle of my right shoulder.
- This is quite recent. The most worrying problem started a couple of years ago: eyes blinking. It worries me because it’s a sign of neurological pain. Probably the frictions are starting to impact the nerves and the marrow. In some moments, especially when I am sit, I can’t avoid to continuously blink my eyes. That’s embarrassing, because it happens even when I am in front of someone or I am talking. Sometimes entire days pass without this problem at all, other days I spend big part of the day furiously blinking my eyes.
What appears outside
- My neck is shorter than normal. This is obviously caused by that deviation at the base of the neck that shortens the length.
- The muscular tone around my neck is inhomogeneous. In fact it is very solid on the left where the spine is closer to the surface, and much more tender on the other side. During my growth, before discovering that all my problems were caused by the bones, I always thought that it was just a muscular problem. I tried to train hard in the gym, and even to find a way to train the mastoid muscle, but of course I always failed.
- The trapezes muscle is hypertrophic. This is probably a result of the muscle adaption to these vertebrae.
- I miss a portion of the spinal curve. And I have sort of a soldier posture, with the chest slightly prominent.
The movements
Obviously all these things condition the way I move. To start with, I look rigid when I turn my neck. I don’t have the full range of motion others have. But as a physiatrist once said, and I agree with her, considered the problem the rest of my body has adapted extraordinarily well.
For example I turn more my entire spine when I need to turn, like when I need to look back while driving. And despite the curve in the top part of the spine, externally my muscles have developed almost normally. I don’t have an evident scoliosis, like many people with hemivertebrae have.
About the right shoulder, its range of motion and functionality are just fine. I don’t feel pain but it pops a lot. It’s like if it can go in place and out of place. Just like for the neck, I feel there a sensation of perennial discomfort. Like if I feel it is always in the wrong position.
Talking about movement, the most difficult thing to do for me is to stand still. Example, I have a very hard time at staying long hours sit in front of the computer, when I am in the office. This is actually the reason why I asked a working time reduction to my company (and I was lucky enough to obtain it).
I have a series of tics that I can’t avoid. They make me snap like if I had the Tourette syndrome, except that I don’t have the Tourette syndrome. I move repeatedly my head to the sides, my right shoulder goes back and forth dozens of times in a day (sometimes hundreds). Then there is the eye blinking.
I am aware I must be a funny show for my colleagues in the office, they see someone sit in front of the computer moving rhythmically like if he is dancing on his chair. I feel a little ashamed for this, but I can’t avoid it. I think after awhile they simply stop noticing and get used to hit.
My story
The first memory I have of this, when for the first time I realized that there was “something”, is when I was a child.
We were at lunch with friends of my parents, and while chatting one of them noticed that “Paolo doesn’t turn the neck very much, he is kind of rigid”. The argument was dropped shortly after, and my parents didn’t care much about it. Of course I was a kid, I didn’t have the presence to say “hey, what is he talking about? Should we care?”. But I registered the event, because I felt ashamed.
I don’t blame my parents for not having taken it seriously at the time. I know that even if the discovery was made in my youth, very little could have been done. My problem is mechanical, and the only way to fix it is to operate. It would be a risky operation, and until my conditions don’t get much worse, there is no reason to even think about it. Even now, that I am 31 and physically much more devastated than that young kid.
However if one day it will be necessary, it will probably be a issue of blocking the hemivertebrae and don’t let it slide out of the central axis. This is what a doctor once figured me as a possible in the future. I hope that future is very far.
A little jump forward and I am in the middle school (age ~13). Once a doctor visited my class and told me that I had scoliosis. In fact, at that age my scoliosis was more evident, and I actually had one shoulder notably higher than the other. My skeleton was growing, and I remember of carrying a bag of heavy books on my back each morning, on the way to school. But I didn’t have pain or other problems. My parents were informed and were suggested to make me start some physical activity.
Swimming was the first suggestion, but I was scared of water (actually I learned to swim at the late age of 28). So I did some athletics and basketball. I was good at running (especially at the 100m), but less than decent at basketball (I am a dwarf!).
Not much happened since high school.
I didn’t have particular problems due to my condition there, except for someone occasionally deriding my rigidity or posture. Aesthetic was the primary focus in those years, and I started training at a gym. I was 16. Since then, I never stopped going to a gym. It’s 15 years now.
Weight lifting, stretching and cardio activities have incredibly helped me. I have been very diligent for all these years. Thanks to all my efforts I arrived at the present ‘almost normal’. Which is a success considering the above.
I always tell myself, and occasionally to my friends, that if someone else had “received” my body probably he had turned into a total wreck in few days. I mean it, no joke. My body requires a super strong maintenance and thanks heaven I am a great worker. All my healthy fixations, included the attention to nutrition, are born not only because I wanted to have them, but also because I had to have them. I don’t have the luxury to make things easy.
Going back to the timeline: the university period. When I was 20 – 26.
Great period, great health. The impact of my disease was really minimal in this years, especially because I had a very good lifestyle. I was sit few hours per day (only few lessons at the university) and trained a lot in the gym. The only problem then was inside. While for everybody else the university period was the age of flirts and love, I had that deformity that lowered my security and self esteem. But that was a minor issue, since I’ve never suffered much for being single.
Then the real troubles started.
I got my degree at the university and became an Electronic Engineer. At age 27 I obtained what I wanted: a job in an important IT company with a great reputation. My life sit for many hours a day started. Eight hours on a chair, sometimes more, five days a week. Besides I was also travelling a lot to reach my company’s customers since I had, and still have, a consultancy job.
Now It’s not difficult to imagine what happened, but I didn’t know all this back then. With that many hours sit, pressure was pushing my bones away from the center. I started to feel a lot of pain. After 1 year the quality of my life got so much worse that I finally decided to take deep exams.
Age 28. Exams revealed the vertebral situation. I also discovered for the first time what was causing the pain in the center of my right shoulder, where I feared of having a cancer since when I was a teenager. I remember of thinking “one day I will discover something very bad about this shoulder, but I don’t have the courage to investigate what is inside now”.
After discovering my disability I searched on internet and I saw many physicians. For what I learned and for what I heard, I can’t do much better than what I am already doing. Gym for maintaining the muscular tone of my back, neck and shoulders, avoid long hours sit on a chair, avoid physical stress in general.
The present
At the time I am writing this article, I am 31 years old.
I started with the statement “I am disabled”, which is what I am.
I am sure my parents would be shaken and worried to read this definition I give to myself. Their usual reaction when there is something that scare them is not to talk about it. But I prefer to call this disease by its name, so I can behave accordingly. By the way I can understand their reaction, and the reaction of my sister and those who love me, to the discovery of this thing that I have. Their fear would come from knowing that I am not perfectly happy and healthy.
If it happens that they read this, I want to tell them: mum, dad (sister, friends, all) I am happy. Of course, I would have rather not had these dumb vertebrae, and I am aware that one day things will get inevitably worse. Maybe I will not turn 70 or 80, but I don’t care. I have a fantastic life, and even if it should end tomorrow I am completely satisfied for the wonder it has been. (not that it has to, eh! If I get some extra tens of years I can still do many funny things)
Someone said “it’s not the years in your life that count, but the life in your years”. And I had a beautiful, adventurous, happy and satisfying life in my years so far. And I am grateful for every moment of it.
Finally, as usual when I write articles, I find that I could have explained things deeper or better or more extensively. But I gave up perfectionism long time ago, understanding that if I’d try to publish only perfect articles I’d publish zero articles. Maybe I’ll find time in the future to add more staff here, or improve the way I said some things. But now, it is good the way it is.
Wow! I am a 50 year old woman, professional quality control engineer for a world wide company and mother of 2 teenagers. I’m just learning in the past couple of years that I have this same exact thing, but not so severe as you. For years I thought I had a muscle problem on my left side between the neck and shoulder where there is a pronounced hypertropic muscle there that I have nicknamed “satan”. He causes me great pain. I first began having problems in the mid 1980’s soon after I stopped growing. I remember at age of 20 a chiropractor warned that I had a problem that could eventually render me unable to walk later in my life. I promptly quit seeing him, but now understand what it was he saw why he said that. I wish I would have listened. I would like very much to talk more. Please email me if you get time. Janet
I am 52 years old and I have known about my T8 hemivertibrae since I was 17 years old. Although I have had a very fulfilling life, no one truly understands the pain and limitations this has caused. I can totally relate when you say you never feel like your spine is aligned right. The hemivertibrae caused an S curve, with the largest in the thoracic area. My neck has normal vertabrae, but does not come straight up from my spine. 52 years of holding my head up straight has caused me tremendous pain, and I too have muscle spasms. I am scheduled for Radiofrequency Ablation of C3,4 &5 facet joint nerves in a few weeks.
It was nice to be able to relate to someone after pain filled night. I wish you well!
Thank you Carla (and to Janet too, we had a private email thread about our diseases) for your answer.
It’s nice to know that you can understand what it means not to feel the spine “aligned”…actually it’s challenging to explain to others that what I feel is not only a “pain” but mostly a persistent sensation that my bones are not where they should!
I am happy to know that you had a fullfilling life! Mine has been fantastic too, and even with this issue I’ve been able to enjoy and experience countless beautiful moments.
In this period the impact of my hemivertebrae to my life is variable, some days I can barely work and even stand in an upright position or sit in a chair, others I feel great and can workout at the gym diligently and do plenty of things.
Today I am working in the office, a bit of pain, some spasm, but I feel quite good.
I wish you the very best too,
P.
Thank you. Send me an email if you want to discuss pain management. I have tried many things!
Carla
Hi. I have a hemi at C7 and it is fused with T1. I found out about it when i was 20. The xray of your neck looks much like mine. I would love to talk some through email.
Hi Marie,
hemi in C7, you almost got me! 🙂
You can write me here: mail[at]paolods[dot]com
I would like to talk with you marie.. I have the same hemi at the same place. I am 23y old and i have so much pain.. But nobody understands me. Here in belgium the doctors dont know what is the best for me.. Very depressing 🙁
I have a hemivertebrae between my c6 and c7 and the doctors here, in Atlanta Georgia, tell me there is not much that can be done with mine either. Very disheartening to learn that I have to live with the constant pain and simply just try to find a decent quality of life with the conservative treatment that I have been receiving over the past two years. I am tired of taking pain meds, wearing pain patches. I just recently found that I have a simple cyst on my left kidney, evidently it is not cancerous, but I have no doubt it arose from taking pain meds every single day.
I’m glad to see some recent activity and discussion regarding this disorder; I don’t feel all alone after all. So, to those of you, or ones you know dealing with one or multiple hemivertebrae, I am with you. Tomorrow always brings new hope…
I just found out that I have a hemivertebrae and feel so lost and confused. I am now in the process of looking into pain management. If you have any ideas or helpful hints, I would love to hear them. I constantly feel like I have to crack my neck and feel like there is a little heavy shelf in the top part of my back. And I have always dealt with migraines. Up until now I never knew what caused them and the pressure I experience. My hemivertebrae also affected my ribs and the top one on the right is causing shoulder pain. I saw a neurosurgeon and he said surgery was sever and dangerous. So that is not an option at this point. But I am worried as I get older it my condition will get worse. I guess I am looking for support and someone who is going through the same thing! Thanks!
Hi Natalie!
I relate 100% to what you wrote! Yes, I also feel like I have to constantly crack my neck, that’s what causes my repeated tics. And I also have a lot of shoulder pain (tough it’s not as severe as the neck pain).
I had the same response as yours from the doctors I consulted: surgery would be dangerous, it’s not something I should consider unless I get A LOT worse. And even if my conditions are far from good (I got a bit worse, since the time I wrote the original post) I am not even thinking about it now.
Even if a lot of my relatives/friends suggest me to take pain suppressant, I never did it to date. I do feel pain frequently, but I also WANT to feel the pain, because it’s the body signal that something is wrong in the alignment of my bones. The day I’ll suppress the pain and walk, run, move carelessly, is the time the frictions will start to really destroy my vertebrae. At least now when I have hard pain I know I have to lie down.
I still find that the only way to deal with this condition, without doing surgery at least, is to stay in shape as much as possible (keeping a good muscular tone), “be light”, eat light, and having a lot of attention at the way you sleep. When the balance is precarious, it’s crucial to sleep in a favorable position. Experience will tell you what’s the best one for you. I alternate sleeping on my back and on my left side.
Don’t feel lost. I am here following your same difficult path and I swear, my hemivertebrae is a total mess. I feel pain basically every day, and I had to adapt my life and its rythms to it. But still I am super happy, my life is blessed with love and adventure, and worrying about how I’ll get worse in the not too distant future (I’ll probably do) is not of help. Ah, about migraines (which I don’t have, at least…), maybe they are caused by your vertebrae problems. But also do a check of your diet. I am quite an expert about nutrition, and I can tell you that a lot of migraines are often caused by processed foods. Maybe you can get rid of this, at least. A hug and good luck!
I went to a chiropractor for lower back pain and they took x-rays. L4 and L5 are hemivertebrae and is the cause of the pain and even a chiropractor said there was nothing he could do. I’m still in school, finishing a PhD, so I’m waiting to see a rotor about it once I get a “real” job.
Stephanie, thank you for sharing.
Pay extra attention to spending lots of hours sit in your future “real” job, for me it’s what started the problems… I basically ignored having a hemi until I started my corporate job.
Good luck! Paolo
I also suffer from this congenital disease called himi vertebrae. except for my issue is in my lower back l4 and l5. l5 is the one that’s only half a bone. I have three small kids and I work full time but can hardly walk at all anymore. The surgery is so invasive its up to a year of recovery and so scary.I have heard horror stories about getting disability it seems there’s no other help for me. If you could please contact me maybe give me some advice it has been a long road in seems to be like an even longer one ahead.
I too have an almost identical hemivertebra in the C spine and also a scoliosis in the lower spine…. 27 and still living reasonably normal. Dreading thatbthe future holds but each day as it comes. X
Jemma, I hope the future holds for you all the best. A hug, Paolo.
It’s helpful to read other people’s experience with hemitvertebra. I discovered mine through a chest xray when the clinic was treating a respiratory infection in 2007. My hemi is T6 with a large bow in my lumbar spine and a fused vertebrae in my neck. I’m 44 years old and lived pretty much asymptomatically until about a year ago. I’ve lost 1.5 inches of height over time and have chronic tension in my back, neck and shoulders.
I had shoulder surgery where they excised part of my clavicle to alleviate a sharp pain. This was the result of my shoulders not being level and the associated wear and tear on the cartilage in that area.
I wanted to share my strategy to deal with the tension and discomfort/pain caused by my hemivertebra, with the hope of inspiring others who are riding a crooked spine.
1. Weekly or bi-weekly Myofascial release / body work. I cried during my first session when I realized how much tension I was living with. Tears of relief – I couldn’t believe how tight I was and how it impacted my life. When you live in tension, your fascia constricts and acts as a straight jacket around your lungs, muscles and organs. When your fascia is stretched and released you will feel like a new person. Find a massage therapist who specializes in myofascial release. I’ve heard acupuncture is excellent also, but I like the deep tissue massage along with the fascia work too much to try it.
2. Yoga. Not the Vinyasa style “flow” yoga. Find a place that offers “Yin” or “Gentle” yoga. These styles of yoga focus on stretching your connective tissue – combined with mindful deep breathing. Each pose (stretch) is held 3-5 minutes which allows time to completely relax targeted areas. 3 months of doing this style of Yoga – 3 or more times per week – will train you to relax the muscles in your shoulders, neck and back on demand. After each session I lie on my back and have the sensation of my spine having a white glow – it’s a good sensation. Since I don’t twist and bend like ‘normal’ people I modify many of the poses to work with my angles. Yoga will change your life and sense of well being in major ways.
3. Lift weights and get strong. For me, this is where I take out my frustrations on my back. Yes, it’s uncomfortable to lift weights, but my experience is that being strong makes holding good posture easy. Posture is the primary thing I focus on. I refuse to be a hunched over person and lifting weights while holding good posture makes it much easier. Not effortless, but a lot easier.
4. Meditate. In addition to yoga I try to find 20 minutes a day to turn off my internal chatter and focus on my breathing. Get good at this and you’ll learn to melt away tension in your back. There are countless resources on the web for instruction on meditation and mindful breathing.
5. Get a foam roller. My back is always full of knots; it’s almost like I have pea gravel under my skin. The foam roller can smash those painful areas and provide immediate relief. YouTube can teach you how to use it.
I know many reading this may be in too much pain to even contemplate this approach and I pray you find comfort and peace. For those who are racked with tension, sore, stiff and demoralized – show that crazy spine who is boss, get in touch with your angles and consider trying any or all of what is outlined above. I’ve emerged from severe depression (likely from the yoga), am in the best shape of my life, am more compassionate to the world and have hope that I can manage this thing. I take Naproxen regularly post workout – but shy away from the muscle relaxers and pain pills until I hit an 8/10 on the pain scale. The last thing I need is a pain pill addiction!
To all of my fellow crooked people out there – I’m silently rooting for you and hope you find the right therapy/routine/medical care/mindset to deal with your symptoms. We all can take satisfaction knowing that we’re innately tougher than most!
Make fitness your new mission in life.
Dear Jason,
thank you so much for your contribution. I really love your attitude and how encouraging your post is. Your advice is useful and I agree basically on everything you wrote, even if personally I’ve never tried myofascial release or yoga (yet). As in the period when I wrote this original post, my physical exercise still constists of moderate weight lifting “only”, for approx. 1.5 hours, 2-3 times per week, as like you I think that it’s super important to have good muscles that support the spine. I’m still not taking any pill or pain suppressants, even if some days are really, really hard for the pain. All in all, I still confirm that my life is incredibly beautiful and I am very grateful for it, even if I’m riding a crooked spine! A big hug and I wish you all the best, Paolo.
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Hi Paolo,
It was only last month when I discovered I had a hemivertebrae at my C7 when I had the XRAY and MRI done to my neck and back. I am 23 years old girl doing my Msc in Engineering and it seems with the long hours spent sitting and the bad mattress and pillow I have at the university dorms, the pain started to appear. I have never faced any issues before and I lived very normally. The C7 hemivertebrae affected my C3-C4 and they have partial fusion. I feel the pain most when I don’t sleep properly (bad sleeping posture) and when I sit for long periods. I am still trying to find the best habits to adapt since this condition is new for me.
I was worried because not only I had pain in my back and neck, but also because with certain neck movements I started to get slight (vibrations/electricity) in my waist. I am having physiotherapy sessions now for my neck and it is getting better. I also changed my mattress and pillow (after trying many pillows, this is what suited me the most! https://www.youtube.com/watch?v=Wo_kVKj74MA )
The physiotherapist told me live normally but carefully, and I have to somehow figure out what this carefully means. I would love to know more about good exercises you found useful for your case as I think our cases are very similar. I don’t want to do exercises that will worsen my case for example!
Thanks for this thread, it let you know that there are people in this world who can relate to what you have and feel. (Although at the beginning this thread depressed me because of its very first sentence!).
Wish you the best and thanks again 🙂
Regards,
Haneen
Dear Haneen,
thank you for your comment. Yes, I do realize that my first sentence in this article, that I wrote few years ago, seems “strong” and may be depressing, but I remember that I wanted to use the word “disabled” specifically because in that period I was feeling very bad and I didn’t want to lie to myself, and be honest about the fact that my issue was a major one, not just a little “defect”, like many people have in their spine. Maybe I’ve been a bit too dramatic, as if I think about it today I still have a wonderful life compared to the life of most people (I travel, go regularly to a gym, walk, etc…), and in some way I am grateful that this weird thing happened to me, because it served me as a main motivator for my personal development -just to name one of the main consequences I had from having an hemivertebrae, I’ve had a strong additional motivation to leave my corporate jo, which I consider one of the best decisions I’ve taken so far-. I do agree that, at least based on my personal experience, the way you sleep is super crucial. If I hit the right position at night, the following day I’m almost not even going to remember that I have this vertebral condition, but if I don’t sleep in the right position…oh dear, the next day is gonna be a nightmare. I tried the type of pillow in the video you linked, it worked for awhile and then I started to feel uncomfortable with it as well, at the end I found that the best support for my neck at night is using 2/3 towels all together as pillow! That’s what I’m doing to date: slepping every night with my head on a little bunch of pillows, and this gives me the best results so far. About the exercise, I don’t feel like recommending any particular type of physioteraphy, but I do definitely feel like recommending doing moderate wight lifting, as having your muscles in a good shape is the best thing for your vertebrae in general (in the neck or in every other area: dorsal area, lumbar area…). I wish you all the best in life, thanks again for stopping by! Paolo.
Hi Paolo,
Would you please take a photo for your pillow made out of towels? I am sick of trying new pillows which all fail to make my neck feel better. I also have a hemivertebrae in my neck…
Thanks
Hey,
sorry to hear you have a hemivertebrae too. As for the towel-pillow I can’t take a picture as I’m currently traveling (and with different pillows often) however if you look in Google Images, there’s a pillow by IKEA called “Gosa Ljlia” that I’ve been using lately and it’s been working well for me. Paolo
Thank you for this post. My son was born this September with many congenital anamolies. It is a blessing to find this post, as I as a 24 year old new mother, am eager to find not only physical but emotional possibilities for my son’s future. He has hemivertebrae in his neck along with other anamolies. I would be beyond happy if we could begin communications through email, if possible? I would greatly appreciate it, as this is a new world for me and reaching out to people who are willing to share their personal experience is incredibly valuable to me. Please let me know. My email is thinksallday@gmail.com , Thank you and I hope you’re doing well!!
Hey. I’m 14 years old and found out I had this problem like 4 months ago. I found out after a football game cause I play football. I felt my right shoulder go numb and I though I dislocated it When I got tackled. I played the whole game So I went to the doctor and they x ray my shoulder. A couple minutes
Later the came rushing in with the X ray and said my neck is broken and rushed me in a CT scan it was like this is bs. They came in like a hour later and said it have a hemivertebrae. they told me what it was and is still didn’t belive them. The doctor came up to me and said “I’m sorry, but you can’t play football. I didn’t know what she ment so I ask for how long and she said the most saddest words and said forever. I was in tears. I was so confused and sad because I love football and I would never think this could happen. she said if I do play there is a huge risk of me being paralyzed the neck down. I went to like 7 doctors and they all they all talked to me and every time they said I can’t play made me cry worse. All of the doctors said that they never seen something like this. I still get upset at night thinking what could happen. I’ve been playing football for about 6 years as WR. I don’t know what I should do. If I should play football because I’ve played it this long with no problem or quit. I really need a answer. No one else knows about this except my parents.
Hi Travis, thanks for sharing this. I imagine how difficult it is to discover this kind of issue at your age (I cried a lot of tears when I discovered about my vertebral condition, and I was already 28), and I understand that football is very important for you now. At 14 your body is still growing and changing, the only answer/advice I can give is take good care of your body (“it’s the only place you have to live”), and if one day you will really have to face the fact that football is not in the cards for you, I hope you’ll be able to see that there are SO MANY other wonderful things to do in life, and so much to try and experience, that not being able to do just one of them won’t make you really feel sad anymore. In the worst case, you can become great at something else and maybe still have football in your life as hobby (with the necessary caution). I wish you all the best, Paolo.
There must be someone out there that feels when I feel! I have spondylosis L1L to L3 and four I have severe facet arthropathy, severe left exit stenosis, protrusion with annular tear, I hemivertebrae in my thoratic area at T9, severe Ville Radick spine shows kyphosis centered at T 11 and 12 hemivertebrae posteriorly seen on the right at T 11 and 12. I have congenital wedging of T9 NT 12 vertebrae I have spondylosis in C2C3 I have osteophytes with severe foraminal stenosis C-5 I have osteophytes with severe bilateral for aminal stenosis C6 I have the same thing for C7 and I have spondylosis from C7-T1. Root compression at C4-5, 6, and C7. I am at this point taking 100 mg of tramadol awaiting surgery at the Hey clinic for spinal and scoliosis surgery in Raleigh North Carolina. The only man that did not ask why I was not in a wheelchair yet but literally told me that he could fix me. That is the only thing that is keeping me going these days I am 48 years old and have been living with issues since I was in seventh grade.
Good luck for the surgery Susan, and a hug.
Thank you very much. I pray everyday and the Lord gives me strength to continue my day until then. How are you doing? I saw your X-ray and was like wow in your neck that really sucks. Is it not fixable? Iyou should do a little research on Dr Hey in Raleigh, NC. He is led by the Lord due to a bad accident when he was 16 which put him down the path to help all those in pain. He does not believe in prescribing pills except for after surgery because he believe in fixing the problem. I never thought I’d hear someone tell me they could fix me. Is there a way to attach pics. Or can I send you mine. It’s strange walking around always feeling a protrusion in your back knowing it shouldn’t be there.
I am doing ok, my trouble with the neck varies a lot in different periods. I just had two great months in which I felt very good and I almost forgot about my terrible spine, now these last days it’s hurting again, which is unfortunate since I am traveling in the US. I never seriously investigated if it can be fixed, but I won’t go through surgery unless things get much worse. For the moment things are fine the way they are, although it’s definitely challenging to live with this issue.
Hi! I am Gábor from hungari and just find your writing. i am still searching the internet on allmost the same problem as yours. I have two vedged vertibras, one at neck-back section, and one at the lumbar level, between the L4-5. Very “nice” move from the nature but i have to deal with them.. My C1 and C2 ‘s are fused together too and the MRI analiser doctor saied; “at the upper sectio fo the cervical region, the processus transversus are fused together on the shortened side” Are yours too, these processus transversusses too? I really on the idea to fix it and as a find information about the whole mess on about my spine, it is a crucial factor of pain and correction surgery factor as well, if i would have a strait spine if it’s possible.
Of course it depends on how flexibel my spine now and how complicated my situation is, because i was born with it as you and the body adapted this way and never felt the correct status, i think. And i’m 34 so i am in about your age and very curious what we can achive for now..
its my upper spine if you can open and want to see it:
http://www.kepfeltoltes.eu/view.php?filename=333MR_G_bor.jpg
Hi Gábor,
yes I saw the picture of your upper spine, interesting to see someone else with a similar situation.
I actually don’t know if the my vetrebrae have the processus transversus fused or not.
I’m still not considering any surgery for myself – I do struggle with this condition but not enough yet to convince me to let the doctors play around my spine. If you go on with the surgery and have updates let me know, I’ll be happy to stay updated about your journey.
Paolo
Found this site by chance. I have an l4 or 5 hemivertibra. I found out at 8 or 9. As a child, I had pain shooting down my leg when I hit my growth spurts. It is easily a pain I can’t forget. I also had heart surgeries as a baby. When I was diagnosed, I was told I’d never be able to run or do any sports other than swim. My parents put me on a swim team and I also joined cross country to spite the doctor who said I couldn’t run. I came in last every meet and went home after every practice to sit in a hot tub with a face full of tears, but I did it for one year.
Since puberty ended I don’t have as many issues with it. I run marathons now and am training for a triathlon. I get massages frequently and stretching is not something to be missed. I also can’t handle a treadmill or any higher ground on my right side. I did get a ct scan for something unrelated recently which found some degeneration, but I’ll worry bout that when the time comes. I’m sorry you have so much pain.
Hey Jaki, thanks for leaving the message. Good luck for your next triathlon / marathons 🙂
I have a few days old child, having same hemivertebrea problem in L3level, apart form problem in his excrete system. I am so depress dont know how my poor baby is going to face situation, my 1day poor baby already had clostomy and will undergo with 2 more surgery and after he have to face hemivertebrea.
Stay strong Chandra. I wish the best of luck to you and your baby. 🧡
When i read this it made me feel less alone about my condition, except mine is a bit worse my neck was the same as yours but my L1-L5 were a mess . I found out about mine when i was 17 and when i saw the X-ray i broke down in tears. (i always knew there was something wrong) I felt fragile, i wasnt myself .Before i found out i thought back pain and all of your joints poping were a part of life. I still tried to live a normal life but since then ive lost faith in god and not a day goes by where i dont think about it . I’m just glad to know that im not alone. I hope that less people suffer from this .
You’re not alone Ruben, stay strong. Pain sucks, but as I often say, it also helps putting things of life in a different perspective. If I didn’t have pain as a constant reminder, I probably wouldn’t be as determined as I am now to take advantage of the periods in which I feel better, and to use well my time to enjoy nature, friends, family, and the other things that make me happy. I wish you the best.
Hi, Paolo
I am pregnant, 20 weeks old, my baby was found in the womb probably hemivertebra in neck c7.
I am looking for any available information, as there is little information on this diagnosis. In my country, hemivertebra are usually removed when a child is 2-3 years old, but everything is difficult with the cervical spine
Good luck with the pregnancy Maria.
Yes as you mention hemivertebrae in the cervical area can’t just be removed, it really depends on the case. Personally I’m doing good with just simple “preservation” treatments, meaning I do gym/yoga/stretchings, and after many years since I wrote this old post life is good for me, although of course I have mobility issues (in particular i can rotate my head only slightly) and some periods with some more pain. Overall I definitely don’t complain. I hope it goes as well for your child and even better.
Paolo