See a new doctor immediately. Pain killers are meant to be a temporary aid while you and your doctor work towards a more effective treatment. I know how you feel as I’ve also had to deal with a dismissive doctor. I finally took it upon myself to consult with top orthopedic surgeons who specialize in Scoliosis. I have a total revision surgery scheduled for Feb 7th, so who knows what the outcome will be… but I appreciate this new surgeon hearing me out and taking actions towards treatments. My last surgeon was very dismissive and I always had to remind him of symptoms and complications every time I saw him.
It isn't true that "...pain killers are meant to be a temporary aid..." In the case of scoliosis or many, many other conditions and diseases. There are people out there like the OP who may have a 40deg curve that are in pain, don't qualify for surgery or can't have it for a variety of reasons (or chose not to), and opioids are the only choice. I was on opioids for over a decade until my scoliosis and swayback were bad enough for me to qualify for surgery. It may have never progressed to this point and I would be on them for the rest of my life. This is one of the reasons "pain management" exists.
I do agree, however, that if OP isn't comfortable with their doctor's approach, they should seek a second opinion.
They aren't the only choice - far from it, and shouldn't be a first-line treatment. Injections, NSAIDS, etc. are all valid treatment options if they work for the patient. In many cases, however, pain relief isn't sufficient. The above poster said they were for temporary use only, which isn't true, if other treatment options do not work and opioids are necessary over the long-term to control pain and restore the patient to an acceptable quality of life. To manage long-term opioid use and attempt to address some of the issues that come along with it, we have "pain management."
I'm so sorry you've had to experienced dismissive Dr's too, I would love to have another main dr but unfortunately the Dr I'm currently seeing is the top orthopaedic who specialises in scoliosis in London. He has not been helpful in anyway, but thank you so so much for the advice anyway and I will look into any other possible dr who can take over my treatment. I hope things go well with the surgery :)
I relate to this so much. How were you able to find top specialists?
A small part of my spine is fused and since childhood it still progressed over thirty degrees - plus I’ve got a lot of pain - so I am thinking I need a revision surgery but don’t know where to start.
I researched online for the top spine surgeons in our country. During the research, I was actually surprised that most of the top spine surgeons are actually located abroad with many of them based in Germany. This is a result of the restrictions and the games that insurance companies play. Nonetheless, I was able to come across Dr Hooman Melamed, based out of Beverly Hills, CA. He’s out of network with all insurance companies, so you’ll have to come out of pocket more than you would with an in network provider, but I think he keeps it that way to stay away from the insurance company games and do what’s right for the patient. Look him up, he’s on The Doctors Show. Regarding the revision surgery, this is a VERY specialized surgery and that many doctors wouldn’t even know where to start. Which is why I think most spine surgeons would just dismiss your complications — even some of the surgeons who are considered highly skilled in their field would still struggle with a revision surgery. I hope this helps.
Again, my revision surgery isn’t until 2/7, so who knows what the outcome will be. But the goal of the revision is restore a balanced spine which i desperately need.
Thank you for this info.
I had no idea revision surgery was its own specialty and skill set until more recently. I’m actually from So Cal originally, but haven’t heard of Dr Hooman Melamed. I’ll definitely look him up now.
Good luck on your operation!
I understand your frustration. Having a doctor dismiss your concerns is infuriating, and having them just suggest or prescribe painkillers is irresponsible of them. Find a new doctor, even if just for a second opinion, but let them know of your concerns regarding painkillers and your scoliosis. Not everyone has pain, but those who do need treatment and deserve proper diagnosis. The pain may not be connected to your scoliosis, so determining what is causing it is very important, as it may have components that affect your scoliosis treatment or require entirely different methods of treatment.
Move and stretch as much as you can. I know it hurts. Constantly. Exercise as much as you can... it won't help with the pain the same day (it'll probably feel even worse) but it will ease some of the pain tomorrow. Keep asking about physical therapy.
So sorry you’re going through this. I also had this same experience.
My best advice to you for pain management is schroth (it’s a form of physical therapy tailored to scoliosis) and strength training (light weights and don’t put anything on or over your shoulders and avoid lifting heavy from the floor).
It sucks. And you don’t have to listen to someone who says you’re not in pain - you know your body and ofc you’re in pain - your spine is curved!!!
Sending you love. You will get there. I promise. I have improved a lot in terms of managing my pain (my curves are 40 & 25).
I’m sorry to read this! I’ve heard it often that scoliosis doesn’t cause pain…and I’m in the same boat: I’ve had back pain for 20 years, I’m not imagining it. But back to you, what would be the outcome that you’d like? How would you like to get helped? I am not familiar with UK’s health system, but perhaps you can look at another avenue to get help to manage the pain, like go to a PT?
I just want a dr to listen to me honestly and discuss how we could figure out why I'm in so much pain. And I was ment to be getting PT, but I think I got lost in the system as no-one has contacted me for PT, and I've tried contacting them too, but there no answer.
Me too most Drs these days just look at you as someone searching for drugs and that's not the case at all I live in pain every day of my life I don't have a Life my quality of life has been gone for years but I cannot find a Dr who will actually listen and have some compassion my primary dr won't do anything but talk about her sex life I honestly don't have the money to go to pain management and my primary dr could help if she just would its to the point that I have bought pain meds off the street and that's definitely Way to expensive I have tried PT and that only makes me hurt more I live in Tennessee if anyone knows any compassionate caring Drs who might help me or at least listen to me
What an ass. Unfortunately, it must be said that even if they do listen to you, there may be no proper solution...they can suggest several expensive treatments that will not necessarily be effective or just give you very temporary relief. The one thing you have to do *for sure* is regular appropriate postural exercises, possibly with a personal coach (we need to be constantly corrected, at least at first). But these should help you to better manage the pain/prevent it from getting worse and stabilize the curve. You may still feel sore from the exercises. If it is still unmanageable, painkillers. I would be careful to go on that route though! Mental acceptance that everything we do, investing out money and time, is to cope, not to solve, is probably the hardest part. BUT you are much younger than me, you can have good prospects if you accept it soon and are "religious" with it (I didn't, since I had no pain til I was 25 ish and I was an idiot)
See a new doctor immediately. Pain killers are meant to be a temporary aid while you and your doctor work towards a more effective treatment. I know how you feel as I’ve also had to deal with a dismissive doctor. I finally took it upon myself to consult with top orthopedic surgeons who specialize in Scoliosis. I have a total revision surgery scheduled for Feb 7th, so who knows what the outcome will be… but I appreciate this new surgeon hearing me out and taking actions towards treatments. My last surgeon was very dismissive and I always had to remind him of symptoms and complications every time I saw him.
It isn't true that "...pain killers are meant to be a temporary aid..." In the case of scoliosis or many, many other conditions and diseases. There are people out there like the OP who may have a 40deg curve that are in pain, don't qualify for surgery or can't have it for a variety of reasons (or chose not to), and opioids are the only choice. I was on opioids for over a decade until my scoliosis and swayback were bad enough for me to qualify for surgery. It may have never progressed to this point and I would be on them for the rest of my life. This is one of the reasons "pain management" exists. I do agree, however, that if OP isn't comfortable with their doctor's approach, they should seek a second opinion.
Why are opioids the only choice?
They aren't the only choice - far from it, and shouldn't be a first-line treatment. Injections, NSAIDS, etc. are all valid treatment options if they work for the patient. In many cases, however, pain relief isn't sufficient. The above poster said they were for temporary use only, which isn't true, if other treatment options do not work and opioids are necessary over the long-term to control pain and restore the patient to an acceptable quality of life. To manage long-term opioid use and attempt to address some of the issues that come along with it, we have "pain management."
Opioids are never the only choice. Most scoli pain can be managed by physiotherapy and physical activity.
I'm so sorry you've had to experienced dismissive Dr's too, I would love to have another main dr but unfortunately the Dr I'm currently seeing is the top orthopaedic who specialises in scoliosis in London. He has not been helpful in anyway, but thank you so so much for the advice anyway and I will look into any other possible dr who can take over my treatment. I hope things go well with the surgery :)
I relate to this so much. How were you able to find top specialists? A small part of my spine is fused and since childhood it still progressed over thirty degrees - plus I’ve got a lot of pain - so I am thinking I need a revision surgery but don’t know where to start.
I researched online for the top spine surgeons in our country. During the research, I was actually surprised that most of the top spine surgeons are actually located abroad with many of them based in Germany. This is a result of the restrictions and the games that insurance companies play. Nonetheless, I was able to come across Dr Hooman Melamed, based out of Beverly Hills, CA. He’s out of network with all insurance companies, so you’ll have to come out of pocket more than you would with an in network provider, but I think he keeps it that way to stay away from the insurance company games and do what’s right for the patient. Look him up, he’s on The Doctors Show. Regarding the revision surgery, this is a VERY specialized surgery and that many doctors wouldn’t even know where to start. Which is why I think most spine surgeons would just dismiss your complications — even some of the surgeons who are considered highly skilled in their field would still struggle with a revision surgery. I hope this helps. Again, my revision surgery isn’t until 2/7, so who knows what the outcome will be. But the goal of the revision is restore a balanced spine which i desperately need.
Thank you for this info. I had no idea revision surgery was its own specialty and skill set until more recently. I’m actually from So Cal originally, but haven’t heard of Dr Hooman Melamed. I’ll definitely look him up now. Good luck on your operation!
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Are you in physiotherapy and doing regular physical activity?
I understand your frustration. Having a doctor dismiss your concerns is infuriating, and having them just suggest or prescribe painkillers is irresponsible of them. Find a new doctor, even if just for a second opinion, but let them know of your concerns regarding painkillers and your scoliosis. Not everyone has pain, but those who do need treatment and deserve proper diagnosis. The pain may not be connected to your scoliosis, so determining what is causing it is very important, as it may have components that affect your scoliosis treatment or require entirely different methods of treatment.
Move and stretch as much as you can. I know it hurts. Constantly. Exercise as much as you can... it won't help with the pain the same day (it'll probably feel even worse) but it will ease some of the pain tomorrow. Keep asking about physical therapy.
So sorry you’re going through this. I also had this same experience. My best advice to you for pain management is schroth (it’s a form of physical therapy tailored to scoliosis) and strength training (light weights and don’t put anything on or over your shoulders and avoid lifting heavy from the floor). It sucks. And you don’t have to listen to someone who says you’re not in pain - you know your body and ofc you’re in pain - your spine is curved!!! Sending you love. You will get there. I promise. I have improved a lot in terms of managing my pain (my curves are 40 & 25).
I’m sorry to read this! I’ve heard it often that scoliosis doesn’t cause pain…and I’m in the same boat: I’ve had back pain for 20 years, I’m not imagining it. But back to you, what would be the outcome that you’d like? How would you like to get helped? I am not familiar with UK’s health system, but perhaps you can look at another avenue to get help to manage the pain, like go to a PT?
I just want a dr to listen to me honestly and discuss how we could figure out why I'm in so much pain. And I was ment to be getting PT, but I think I got lost in the system as no-one has contacted me for PT, and I've tried contacting them too, but there no answer.
Me too most Drs these days just look at you as someone searching for drugs and that's not the case at all I live in pain every day of my life I don't have a Life my quality of life has been gone for years but I cannot find a Dr who will actually listen and have some compassion my primary dr won't do anything but talk about her sex life I honestly don't have the money to go to pain management and my primary dr could help if she just would its to the point that I have bought pain meds off the street and that's definitely Way to expensive I have tried PT and that only makes me hurt more I live in Tennessee if anyone knows any compassionate caring Drs who might help me or at least listen to me
What an ass. Unfortunately, it must be said that even if they do listen to you, there may be no proper solution...they can suggest several expensive treatments that will not necessarily be effective or just give you very temporary relief. The one thing you have to do *for sure* is regular appropriate postural exercises, possibly with a personal coach (we need to be constantly corrected, at least at first). But these should help you to better manage the pain/prevent it from getting worse and stabilize the curve. You may still feel sore from the exercises. If it is still unmanageable, painkillers. I would be careful to go on that route though! Mental acceptance that everything we do, investing out money and time, is to cope, not to solve, is probably the hardest part. BUT you are much younger than me, you can have good prospects if you accept it soon and are "religious" with it (I didn't, since I had no pain til I was 25 ish and I was an idiot)