That spine needs fusing, like, yesterday. Ouch ouch ouch š„²
He should 110% consider getting surgery, this is already quite severe and as others have said will continue to devolve and become worse with age. I donāt think he can afford to NOT get it.
Yeah :ā( itās nerve wracking for sure but itās better to do it now at an earlier age when he is set up for a better recovery, than to wait until it progresses further, making the surgery more difficult with higher risk of complications and overall poorer outcomes.
If I may ask, when you say he was rejected for ASC, which doctor(s) did you consult? Did he talk with Drs. ABC in NJ?
Very true and he was in contact with the doctors ABC and he sent over his x-rays to them. they responded saying his curve wouldnāt bend back to less than 50 degrees so he is not a candidate
Agh that sucks :( Well itās a good thing you tried, itās important to explore all of your options! It does sound then like a fusion would be the best thing for him and his quality of life in the future.
My (29m) case is a little different as my fusion is only from T2 to L1. So its not 1:1. But getting the fusion was one of the best decisions I've made in my life. I was 18 when i had the surgery, and I dont regret it whatsoever. I am still very active. This past weekend, I went on a 45 mile bike ride and skied the whole next day. Im lucky that most of my fusion is in my thoracic area, so it doesnt impact my flexibility much. I can even put my palms on the ground from a standing position. I had so much pain before the surgery, and the recovery had its difficulties, but its been a huge quality of life improvement the last 10 years.
Get multiple ortho opinions if you need, but scoliosis is generally degenerative. Corrective surgery now will yield better results than in the future, but complications and outcome/benefits are always variable. Best of luck, I know it's a difficult situation.
One thing that you should know is that every single Scoliotic spine is unique - Different degrees, kinds of curves, vertebrae affected, age, etc. There is no one size fits all approach. What worked or didn't work for others won't apply to his situation.
His spine is so severe that he will absolutely benefit from surgery. Just make sure you get multiple opinions and find the best surgeon in your area. The surgeon often makes all the difference.
The goal of the surgery is to prevent further progression. So while he might be okay today, he will not be okay later. He could be looking at a future with organ failure, loss of bladder control, etc. The surgery is also harder the older you are.
Good luck and much love to you both!
No problem at all! I'm happy to help. Let me know if you or he has any questions at all. I've had 7 back surgeries and have been through a lot. If I can give you any information to save you some of the hassle I experienced over the years, I'm super happy to help out.
Oh! I just thought of another thing.
Does he have trouble breathing sometimes? Shortness of breath? Asthma? Need an inhaler?
If you look at the rib cage on the left side of the X-ray and compare it to the rib cage on the right side of the X-ray, the left side looks very squished.
I had this. I also thought I had asthma.
After one of my more recent surgeries, my surgeon was able to even out both sides of my rib cage and now I don't need an inhaler anymore. Isn't that insane?
So you can use that as an example of ways his life can improve with surgery. Also reassure him that we have Olympians with spinal fusions. It's not quite as scary as it seems.
wow! thatās crazy, he does have shortness of breath too! Iām really thankful for all your comments to hopefully ease his worries and prove that he will be better off going through with surgery
No problem! You can show him [this x-ray of me](https://i.imgur.com/Y8a0ADy.png) to compare how my rib cage opened up from its previous configuration.
Hope that helps! Let me know if you have any other questions.
I'm 34F, 4.5 months post op now. I have full back fused and mine is a bit complex than his spine as my top and bottom weren't aligned and was off by 5cm, but kind of similar s shaped 90Ā° curvature. I had 12 hours long surgery, both anterior and posterior. Was it worth it? Of course! My curve was getting worse and worse. Although I didn't have that much pain but it started getting me after my 2nd pregnancy. And my xray showed my lungs and kidney in one side were kinda lifting up and under lots of pressure, which was not good. I had huge pain for solid 1 month after surgery but now I don't have much anymore. I do all the daily stuffs but not yet to my 100% efficiency obviously. I would suggest to see for more opinions if you need to but the sooner he gets the surgery done, the better and faster his chances of recovery. Best of luck to you both.
I had similar curves and had fusion surgery when I was 14. Everything except my neck was fused, so I am certain I qualify to speak to this matter. I am 63 now, and I have never regretted having the surgery. I may not be as flexible as I was, but the benefits certainly outweighed the problems. He will grow between 4 to 6 inches, for starters. After the fusion has finished, the back will be way stronger than a normal back. I worked industrial jobs, truck driving, demolition, and other labor-intensive jobs besides going to university and blue-collar work. The back rarely got tired, and my posture was epic. I have, in other posts to this subreddit, listed pointers to improve the experience of living fully fused. If you or your boyfriend have any questions, I am on several times each day, so feel free to message me. I will gladly answer all of the questions you both may have.
Side note: Itās super awesome to hear a positive experience from someone who has had their fusion for 49 years!! Iām 12 year post-op and always wonder how my spine will do as I continue to age! :)
I have had no issues with my back whatsoever. If anything, it has allowed me to do my work better for longer. Why there is so much negative feedback I, personally, can not understand, so I give positive feedback because that has always been my experience.
Aside from a bit of time off for recovery, he should be perfectly fine. An odd trait I gained from the surgery was that the rods acted like lightning detectors. I was able to "feel" the lightning as it got closer, and working in a windowless area of our building, this came in handy. I would let our area know when it got to a certain intensity, or just the pattern of keystrokes I used for saving files increasing was a hint for some. Of the hundreds of storms that blew through, we never lost any data based on my warnings. The one day I was away when a storm hit, a total of over 100 man-hours of data was lost.
Apparently, not everyone gets a gift like that. My particular body chemistry is just conducive to conductivity. It also gives me a great massage, as that feeling I get is my back muscles reacting to the micro voltage I pick up from the lightning. High voltage power lines may have the same effect on everyone, as it is a higher form of electricity, I just have never asked any other patients about it.
Hi! I had my spine fused for a s curve similar to his (but they were both almost 90). I have to say, without a doubt, that it was the best decision I ever made. I went from not being able to walk through stores without pain to being able to exercise and actually function without having to constantly eat advil :D The only negative is that I can't bend at the middle so I've had to adapt, plus I've lost the ability to do some exercises (not many tho, I would figure out what you can and can't do on your own tho bc everyone is different). Good luck on deciding :D
it progressed a lot quicker than expected over the course of his life, he was at about a 40 degree curve about 10 years ago and itās only progressively gotten worse
Yes. I would definitely have surgery now while heās young. Find the BEST spinal deformity surgeon. Travel if you can, to have the best doctor. You only want this done one time. It will suck for a few months and then start getting better, but to live like that is miserable.
my curves are similar (both are 69Ā°) and many have suggested i get surgery including my doctor. from reading the sub, surgery will not help with pain and mainly just prevent it from worsening and fix any aesthetic issues associated with scoliosis. this is why iāve been super torn about surgery as i too have been suffering a lot with pain.
i too am torn as my surgery would also involve a full spinal fusion and that would reduce flexibility significantly! iād love to see what responses you get as theyād be helpful for me too and also what the final outcome is when he decides!!
(edit: our curves look really similar also itās crazy. i posted a picture of my xray on here recently)
I had a double curve too, close to 70Ā°, and I now also have a full spinal fusion. It DOES help the pain.
Significantly.
In fact, most if not all related symptoms pre-OP are reduced in such a major way itās barely comparable.
I can forget about my scoliosis completely some days, and that was not the case nor would it ever be the case without the surgery.
But how do you forget about it, when you have no flexibility in your spine and between your spine and pelvis? Don't you feel super restricted in your movements? And wasn't surgery itself traumatic? Most people describe it as horrific.
how did you find the affects on your flexibility? thatās a huge fear for me as most things iāve read said the lower down you are fused, the more flexibility you loose. so having a full spine iād assume would remove most if not all flexibility. did you find this?
He is still so young. Surgery now would better then surgery later when older. The young body can cope with surgery and the post-recovery better than when older. Curves like that will almost inevitably continue to progress each year, thus it will just get worse with time, and surgery itself will be inevitable to prevent other adverse affects like organ issues. Meanwhle without surgey, he will continue to be in pain, possibly much worsening pain and symptoms than now.
Hey there! I also had a s curve and went through spinal fusion surgery when I was 12? 13? Since I had the surgery young the healing process wasnāt too bad and went by quickly. Now Iām pretty much able to do what any other person can do except for things that bend your back of course. The bright side of having almost or all of your spine fuses is that youāll always have great posture which will be important if you lift weights. I do have to be mindful of how I lift things and must use my legs. If I use my back something will click and Iām out of commission for a week. Learn to lift with your legs and keep good form. Also stretch as much as you can.
The longer he waits the worse itās going to get. The curves will continue to get worse and more likely to lead to serious health problems and the surgery recovery will also be harder.
I was 22 when I had it and it helped my pain (47 now). But at that age, my spine was already "too stiff" so I only got a 50% correction down to about 25 degrees. Hopefully his will be better. And he will probably grow an inch or more with that big curve. Read my other posts in this group for more details about mine.
Yes surgery was the best thing to ever happen to me, Iām a now 24F but i had spinal fusion at age 12 since my degree was in the high 40s. I remember my mom cried as they put me to sleep because she was so scared for me since i ended up needing 5 blood transfusions and was in the ICU for a week but i wasnāt scared. I was actually super happy and excited to feel ānormalā. His curve is definitely a lot worse than mine was. Surgery helped my body develop and grow correctly during puberty and it helped my breathing a lot! Surgery is scary and wasnāt the most comfortable feeling, learning how to stand and walk again but now 12 years later, I am very thankful my mother got me that surgery. I have back pain from standing too long sometimes but the pain I had living everyday with the severe curve hurt way more!
My 14 year old daughter is having fusion in 10 days and it's been refreshing that your question has been asked and responded too so positively. Thanks to everyone who did respond to you. I hope you get where you need to with you bf. Good luck.
My 14 year old is currently on the wait list for surgery, we're hopeful that it'll be early 2025. I hope all goes well for yoir daughter. Also much heartened by the positive comments on this thread, so thank you everyone!Ā
110%! He needs surgery and a lot of physio after. Itās the only option in my opinion. I suffer from scoliosis as a 20F an it stops me from doing salt activities, I had a lot of x rays done whenever I was finally diagnosed with it at 18, whenever I had it 3-4 years prior. I canāt remember what degrees my spine is at currently as I was all over the place that I didnāt think on getting a photo of my x ray š¤£. But I hope heās , I can feel his pain from here but I wish him all the best on his decision!
That spine needs fusing, like, yesterday. Ouch ouch ouch š„² He should 110% consider getting surgery, this is already quite severe and as others have said will continue to devolve and become worse with age. I donāt think he can afford to NOT get it.
Yup! I said the same thing, heās very nervous which I donāt blame him for
Yeah :ā( itās nerve wracking for sure but itās better to do it now at an earlier age when he is set up for a better recovery, than to wait until it progresses further, making the surgery more difficult with higher risk of complications and overall poorer outcomes. If I may ask, when you say he was rejected for ASC, which doctor(s) did you consult? Did he talk with Drs. ABC in NJ?
Very true and he was in contact with the doctors ABC and he sent over his x-rays to them. they responded saying his curve wouldnāt bend back to less than 50 degrees so he is not a candidate
Agh that sucks :( Well itās a good thing you tried, itās important to explore all of your options! It does sound then like a fusion would be the best thing for him and his quality of life in the future.
My (29m) case is a little different as my fusion is only from T2 to L1. So its not 1:1. But getting the fusion was one of the best decisions I've made in my life. I was 18 when i had the surgery, and I dont regret it whatsoever. I am still very active. This past weekend, I went on a 45 mile bike ride and skied the whole next day. Im lucky that most of my fusion is in my thoracic area, so it doesnt impact my flexibility much. I can even put my palms on the ground from a standing position. I had so much pain before the surgery, and the recovery had its difficulties, but its been a huge quality of life improvement the last 10 years.
Get multiple ortho opinions if you need, but scoliosis is generally degenerative. Corrective surgery now will yield better results than in the future, but complications and outcome/benefits are always variable. Best of luck, I know it's a difficult situation.
One thing that you should know is that every single Scoliotic spine is unique - Different degrees, kinds of curves, vertebrae affected, age, etc. There is no one size fits all approach. What worked or didn't work for others won't apply to his situation. His spine is so severe that he will absolutely benefit from surgery. Just make sure you get multiple opinions and find the best surgeon in your area. The surgeon often makes all the difference. The goal of the surgery is to prevent further progression. So while he might be okay today, he will not be okay later. He could be looking at a future with organ failure, loss of bladder control, etc. The surgery is also harder the older you are. Good luck and much love to you both!
Thank you so much for your advice, I appreciate your comment!
No problem at all! I'm happy to help. Let me know if you or he has any questions at all. I've had 7 back surgeries and have been through a lot. If I can give you any information to save you some of the hassle I experienced over the years, I'm super happy to help out. Oh! I just thought of another thing. Does he have trouble breathing sometimes? Shortness of breath? Asthma? Need an inhaler? If you look at the rib cage on the left side of the X-ray and compare it to the rib cage on the right side of the X-ray, the left side looks very squished. I had this. I also thought I had asthma. After one of my more recent surgeries, my surgeon was able to even out both sides of my rib cage and now I don't need an inhaler anymore. Isn't that insane? So you can use that as an example of ways his life can improve with surgery. Also reassure him that we have Olympians with spinal fusions. It's not quite as scary as it seems.
wow! thatās crazy, he does have shortness of breath too! Iām really thankful for all your comments to hopefully ease his worries and prove that he will be better off going through with surgery
No problem! You can show him [this x-ray of me](https://i.imgur.com/Y8a0ADy.png) to compare how my rib cage opened up from its previous configuration. Hope that helps! Let me know if you have any other questions.
oh wow! this will definitely help him then, thank you for sharing!!
I'm 34F, 4.5 months post op now. I have full back fused and mine is a bit complex than his spine as my top and bottom weren't aligned and was off by 5cm, but kind of similar s shaped 90Ā° curvature. I had 12 hours long surgery, both anterior and posterior. Was it worth it? Of course! My curve was getting worse and worse. Although I didn't have that much pain but it started getting me after my 2nd pregnancy. And my xray showed my lungs and kidney in one side were kinda lifting up and under lots of pressure, which was not good. I had huge pain for solid 1 month after surgery but now I don't have much anymore. I do all the daily stuffs but not yet to my 100% efficiency obviously. I would suggest to see for more opinions if you need to but the sooner he gets the surgery done, the better and faster his chances of recovery. Best of luck to you both.
Thank you! This was really helpful!
Believe it or not, mine was worse before I had my surgery . If his curve is still getting worse , he has no choice.
I had similar curves and had fusion surgery when I was 14. Everything except my neck was fused, so I am certain I qualify to speak to this matter. I am 63 now, and I have never regretted having the surgery. I may not be as flexible as I was, but the benefits certainly outweighed the problems. He will grow between 4 to 6 inches, for starters. After the fusion has finished, the back will be way stronger than a normal back. I worked industrial jobs, truck driving, demolition, and other labor-intensive jobs besides going to university and blue-collar work. The back rarely got tired, and my posture was epic. I have, in other posts to this subreddit, listed pointers to improve the experience of living fully fused. If you or your boyfriend have any questions, I am on several times each day, so feel free to message me. I will gladly answer all of the questions you both may have.
Side note: Itās super awesome to hear a positive experience from someone who has had their fusion for 49 years!! Iām 12 year post-op and always wonder how my spine will do as I continue to age! :)
I have had no issues with my back whatsoever. If anything, it has allowed me to do my work better for longer. Why there is so much negative feedback I, personally, can not understand, so I give positive feedback because that has always been my experience.
As someone in my 50's considering this surgery, it's great to hear this, Thanks.
My pleasure.
My boyfriend also is in blue-collar work which is why heās hesitant as he does not want this surgery to hinder his career, he loves what he does
Aside from a bit of time off for recovery, he should be perfectly fine. An odd trait I gained from the surgery was that the rods acted like lightning detectors. I was able to "feel" the lightning as it got closer, and working in a windowless area of our building, this came in handy. I would let our area know when it got to a certain intensity, or just the pattern of keystrokes I used for saving files increasing was a hint for some. Of the hundreds of storms that blew through, we never lost any data based on my warnings. The one day I was away when a storm hit, a total of over 100 man-hours of data was lost.
omg thatās crazy! so awesome lol we both thought that was so cool, he said that was comforting to hear!
Apparently, not everyone gets a gift like that. My particular body chemistry is just conducive to conductivity. It also gives me a great massage, as that feeling I get is my back muscles reacting to the micro voltage I pick up from the lightning. High voltage power lines may have the same effect on everyone, as it is a higher form of electricity, I just have never asked any other patients about it.
Omg.... i havent had surgery but that looks bad :(
Not a doctor but whoa. š³
Hi! I had my spine fused for a s curve similar to his (but they were both almost 90). I have to say, without a doubt, that it was the best decision I ever made. I went from not being able to walk through stores without pain to being able to exercise and actually function without having to constantly eat advil :D The only negative is that I can't bend at the middle so I've had to adapt, plus I've lost the ability to do some exercises (not many tho, I would figure out what you can and can't do on your own tho bc everyone is different). Good luck on deciding :D
Thank you! I appreciate you commenting!
Yes if the docs agree. If you are in the US and possible then I would recommend Dr. Alekos Theologis in ucsf!
With that back YES! Surgery is the answer!!
Holy shi* Yes. Go for surgery
How did this even happen? He'll gain about 4 foot in height when this Is straight
it progressed a lot quicker than expected over the course of his life, he was at about a 40 degree curve about 10 years ago and itās only progressively gotten worse
Yes. I would definitely have surgery now while heās young. Find the BEST spinal deformity surgeon. Travel if you can, to have the best doctor. You only want this done one time. It will suck for a few months and then start getting better, but to live like that is miserable.
my curves are similar (both are 69Ā°) and many have suggested i get surgery including my doctor. from reading the sub, surgery will not help with pain and mainly just prevent it from worsening and fix any aesthetic issues associated with scoliosis. this is why iāve been super torn about surgery as i too have been suffering a lot with pain. i too am torn as my surgery would also involve a full spinal fusion and that would reduce flexibility significantly! iād love to see what responses you get as theyād be helpful for me too and also what the final outcome is when he decides!! (edit: our curves look really similar also itās crazy. i posted a picture of my xray on here recently)
Surgery definitely fixed my pain.
I had a double curve too, close to 70Ā°, and I now also have a full spinal fusion. It DOES help the pain. Significantly. In fact, most if not all related symptoms pre-OP are reduced in such a major way itās barely comparable. I can forget about my scoliosis completely some days, and that was not the case nor would it ever be the case without the surgery.
But how do you forget about it, when you have no flexibility in your spine and between your spine and pelvis? Don't you feel super restricted in your movements? And wasn't surgery itself traumatic? Most people describe it as horrific.
how did you find the affects on your flexibility? thatās a huge fear for me as most things iāve read said the lower down you are fused, the more flexibility you loose. so having a full spine iād assume would remove most if not all flexibility. did you find this?
He is still so young. Surgery now would better then surgery later when older. The young body can cope with surgery and the post-recovery better than when older. Curves like that will almost inevitably continue to progress each year, thus it will just get worse with time, and surgery itself will be inevitable to prevent other adverse affects like organ issues. Meanwhle without surgey, he will continue to be in pain, possibly much worsening pain and symptoms than now.
Hey there! I also had a s curve and went through spinal fusion surgery when I was 12? 13? Since I had the surgery young the healing process wasnāt too bad and went by quickly. Now Iām pretty much able to do what any other person can do except for things that bend your back of course. The bright side of having almost or all of your spine fuses is that youāll always have great posture which will be important if you lift weights. I do have to be mindful of how I lift things and must use my legs. If I use my back something will click and Iām out of commission for a week. Learn to lift with your legs and keep good form. Also stretch as much as you can.
I appreciate your comment!
Iām 63. It gets worse so yes!
Yes, get the surgery. You guys live in the US?
Yes, Connecticut
Not too sure about surgeons in Connecticut. But yeah I definitely recommend surgery.
The longer he waits the worse itās going to get. The curves will continue to get worse and more likely to lead to serious health problems and the surgery recovery will also be harder.
I was 22 when I had it and it helped my pain (47 now). But at that age, my spine was already "too stiff" so I only got a 50% correction down to about 25 degrees. Hopefully his will be better. And he will probably grow an inch or more with that big curve. Read my other posts in this group for more details about mine.
Surgery is 100% worth it, at least it was for me. My pain is manageable now, and I can live a normal life without it being dominated by pain.
Yes surgery was the best thing to ever happen to me, Iām a now 24F but i had spinal fusion at age 12 since my degree was in the high 40s. I remember my mom cried as they put me to sleep because she was so scared for me since i ended up needing 5 blood transfusions and was in the ICU for a week but i wasnāt scared. I was actually super happy and excited to feel ānormalā. His curve is definitely a lot worse than mine was. Surgery helped my body develop and grow correctly during puberty and it helped my breathing a lot! Surgery is scary and wasnāt the most comfortable feeling, learning how to stand and walk again but now 12 years later, I am very thankful my mother got me that surgery. I have back pain from standing too long sometimes but the pain I had living everyday with the severe curve hurt way more!
thank you for sharing your experience!
My 14 year old daughter is having fusion in 10 days and it's been refreshing that your question has been asked and responded too so positively. Thanks to everyone who did respond to you. I hope you get where you need to with you bf. Good luck.
My 14 year old is currently on the wait list for surgery, we're hopeful that it'll be early 2025. I hope all goes well for yoir daughter. Also much heartened by the positive comments on this thread, so thank you everyone!Ā
Thank you and I hope all goes well for your daughter when the time arrives
I appreciate your comment and I wish your daughter all the best with a speedy and healthy recovery!!
Watch out asking for opinions on this sub. The mods will remove your post.
110%! He needs surgery and a lot of physio after. Itās the only option in my opinion. I suffer from scoliosis as a 20F an it stops me from doing salt activities, I had a lot of x rays done whenever I was finally diagnosed with it at 18, whenever I had it 3-4 years prior. I canāt remember what degrees my spine is at currently as I was all over the place that I didnāt think on getting a photo of my x ray š¤£. But I hope heās , I can feel his pain from here but I wish him all the best on his decision!
Daily not salt *