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Thread: Well... need some opinion

  1. #31
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    I had an appointment with an orthopedist. According to his opinion my curve shouldn't evolve significantly in the near future. Yet he said over decades it could evolve because of degeneration. I've been prescribed physical therapy and some kind of massage, electromyostimulation, and I think pulsed electromagnetic fields therapy whatever that means. And of course a list of NSAIDs and muscle relaxants.

    The doctor didn't even mention surgery. I think I need a second opinion. But within another year or two I'll have another x-ray so that I'll know then whether the curve progresses significantly or not. The way I understood until now is that surgery is not a treatment for pain. Its designed to stop the progression by all means.

    Anyway does anyone(especially non-surgical patients) have any pain relief from the above mentioned treatments(if these can be called as such)?

    Thanks for reading.
    Last edited by Delta107; 06-28-2013 at 11:26 AM.
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    Attachment 1494 Sagittal plane

  2. #32
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    Quote Originally Posted by Delta107 View Post
    I had an appointment with an orthopedist. According to his opinion my curve shouldn't evolve significantly in the near future. Yet he said over decades it could evolve because of degeneration. I've been prescribed physical therapy and some kind of massage, electromyostimulation, and I think pulsed electromagnetic fields therapy whatever that means. And of course a list of NSAIDs and muscle relaxants.

    The doctor didn't even mention surgery. I think I need a second opinion. But within another year or two I'll have another x-ray so that I'll know then whether the curve progresses significantly or not. The way I understood until now is that surgery is not a treatment for pain. Its designed to stop the progression by all means.

    Anyway does anyone(especially non-surgical patients) have any pain relief from the above mentioned treatments(if these can be called as such)?

    Thanks for reading.
    Delta, I'm replying with a quote so that I have at hand all of the things that you have been prescribed.
    I would get a second opinion. We have a top surgeon here that takes ONLY cases that are >70* or otherwise significant in some way. If your pain is tolerable, that's great. But from what you describe, it isn't. My surgeon said that pain WAS an indicator for having surgery, even on smaller curves. Most surgeons here in the USA will say the same thing. It's my understanding that progression is most likely on curves >50*, not because of degeneration but because of the force of gravity. Your muscles can only do so much. Being physically fit is ALWAYS a good idea for anyone, but especially for us. Unfortunately, this alone does not stop progression. You can look this up on the internet and find all kinds of information about the >50* progression risk. I think it's like 1* to 2* per year on average. The larger the curve, the greater the likelihood of more rapid progression. I'm not trying to scare you. It's just the information that's out there. Many people with large curves opt not to have surgery. That's a very personal decision. Did your doctor measure your curve? Did he compare old x-rays with the new ones?

    As far as the treatments prescribed to you, I have had EVERY single one except pulsed electromagnetic field therapy. On that note, electromagnetic therapy was a fad that swept through the USA about 15 years ago. People were wearing magnetic bracelets, magnetic shoe inserts, and even buying magnetic blankets. I had a friend that bought into the whole scam. She swore by it until she realized that she'd spent $100's and after a few months was still requiring the same amount of pain meds and really didn't feel any better. It had an initial placebo effect.

    The NSAID's do help with pain and inflammation. Some of them work as well as or better than low dose narcotics, especially Naproxen Sodium (Aleve) and Ibuprofen (Advil) in my case. The problem with these drugs, as many know, is that they are very hard on the stomach and kidneys. According to my lab tests I'm in stage two renal failure from long term NSAID use even though I don't use them every day. I'm 44 years old. They also affect the heart. I have a tachyarrhythmia (my heart beats too fast) and had a bad reaction only once. With that said, I have found these drugs to be most helpful with pain to a point. The Cox 2 inhibitors designed to protect the stomach haven't worked as well for me personally. Other people have had successful relief with them.

    Muscle relaxants, at least in my case, are a must. I suffer horribly from muscle rigidity, spasticity, etc. The fact that we are imbalanced puts a large amount of strain on our muscles just to keep us upright. The drawbacks of these medications are, of course, drowsiness. There is one that I know of that I take that is not supposed to lose its efficacy over time even though the body gets used to the drug and after some time there is no drowsiness. That drug is baclofen. Other muscle relaxants that I've personally tried make me drowsy or when the drowsiness wears off over time so does the way the drug works. I had one affect my heart. Your doctor will have to work with you to find out what's best for you. I'm on baclofen and Klonopin, which is a long acting benzodiazepine. I am prohibited from having any alcohol because of the danger of mixing a benzo with it. It can cause a dangerous drop in blood pressure. So if you drink alcohol, make sure that your doctor is aware of this.

    What kind of massage therapy have you been prescribed? I have had both types of massage. A general massage feels great and can help relax me. The deep muscle massage I have renamed "muscle massacre"! It really helps some people, but only aggravated my nerve endings and made my pain worse. I've had myofascial release, which was basically the physical therapist gently pulling my skin in different directions. It was calming and usually felt good, but didn't give any lasting relief at all. She just had me lay on my back while she put her hands under me. It was something I felt anyone could have done.

    The electrostimulation that I had was designed to strengthen the muscles on the convex side of the curve (outside). My physician at the time said he was going to cure me that way and write a paper on the cure he invented! This procedure has been tried and tested over the years by many physicians and proves to be ineffective. It's time consuming therapy. It provided NO relief. It did not improve my curve at all.

    Physical therapy, depending on the exercises given, went both ways for me. As a youngster, they gave me a standard set of exercises to do that they gave ALL the scoliosis patients. These exercises actually required me to do things that exaggerated my loss of thoracic kyphosis and loss of lumbar lordosis. In other words, they completely flattened my back in the sagittal plane (side view) which is not good. These exercises INCREASED my pain. Later on, I found a very good physical therapist that prescribed exercises specific to my needs. These exercises reduced my pain so dramatically that I no longer needed prescription pain medication. The drawback to this was that once my curve increased over 40*, the exercises no longer worked at reducing pain. Hopefully, you will find some exercises that help. You have to be very open with your physical therapist and tell him/her whether it's working for pain, doing nothing, or making things worse. I've gotten to the point in my life that I'm very proactive with my physical therapists and will blatantly tell them if it's helping or not. I refuse to do anything that aggravates my pain unless I can see a longer term benefit for working through the pain.

    The things that have helped me the most are unfortunately medications. Aside from oral medications, Botox injections into the rigid muscles and trigger point injections have helped the most. But I have been diagnosed with Cervical Dystonia which is not specific to people with scoliosis. I don't have the uncontrolled head movements like some people have. I have some twitching but mostly rock hard muscles. So I don't know if this would help you or not. If you have muscle spasms, I would suggest trying the trigger point injections. It breaks them up and reduces the pain that way.

    Sorry for the book. I hope you find my experiences somewhat helpful.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  3. #33
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    Aug 2012
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    Hi, just wanted to write a bit, I haven't posted here in a while. I intend to have another appointment with the orthopedist. Generally the physiotherapy exercises they prescribed work in a way. This is by no way treatment. But it is managing my pain very well. I didn't get a muscle relaxant injection in more than a month. I can't say I am better actually but I think I can live a few years with this. I think within two years or less we'll find out how fast this thing is progressing, and after that I'll see what I do next. The mental part is very difficult for its so uncertain what will happen to me. Possibly a good way to start would be to continue my training in graphics design and make a bit of cash.

    For some reason(because of scoliosis) when I use my both hands on the computer mouse + keyboard my spine gets very very strained. This office culture isn't the future for sure. Anyone with a bit of knowledge of anatomy can see that our spine wasn't built for a modern office activity. I was arguing with a friend of mine that the computer input methods must change because its not comfortable to stay a few hours in front of the monitor even for healthy persons. Yet he said that hey the mouse is so nice and good its precise and so on.

    Besides my experience so far shows me that I don't get pain simply by using the computer for a long time.(i.e. browsing and typing something once in while) The pain shows up when I dabble with both the mouse and keyboard simultaneously. Its weird I know that but that's it.
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    Attachment 1494 Sagittal plane

  4. #34
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    Without looking back through our posts, have you had your x-rays up all along? I don't remember. I just now looked at them and that seems to be a pretty big curve! Your sagittal plane looks great to my layman's eye considering how large that thoracic curve is. So that's at least good news. I would get a second opinion if you can.

    I'm sorry to hear that you aren't feeling better after all this time. As it turns out, much of my pain and my scoliosis, for that matter, may be coming from bigger problems. I was recently diagnosed with "muscle disease" probably Muscular Dystrophy and possibly Ehlers Danlos Syndrome. So the muscle disease can explain the muscle pain. It doesn't explain the bone pain I get in my spine, though. But a connective tissue disorder would seem a logical explanation for MY scoliosis. Right now I'm pretty much hating this. I have a lot more testing to go through to determine exactly which muscle disease I have.

    Have they tested you for anything like that? I'm not suggesting by any means that everyone with scoliosis and/or pain has muscle disease. It's just a thought. I hope you find something to make you feel better. You are completely right about sitting in front of a computer. Have you considered using a laptop and laying in a recliner using pillows as necessary to support the parts of your body that need more support? I have an adjustable bed that I put in a recliner type position while I use my laptop. It helps tremendously with the strain. I don't even use my desktop anymore, except for about once a month. It's not even hooked up to the internet anymore. LOL

    Thanks for updating us. I hope you get things figured out soon.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  5. #35
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    Quote Originally Posted by rohrer01 View Post
    Without looking back through our posts, have you had your x-rays up all along? I don't remember. I just now looked at them and that seems to be a pretty big curve! Your sagittal plane looks great to my layman's eye considering how large that thoracic curve is. So that's at least good news. I would get a second opinion if you can.

    I'm sorry to hear that you aren't feeling better after all this time. As it turns out, much of my pain and my scoliosis, for that matter, may be coming from bigger problems. I was recently diagnosed with "muscle disease" probably Muscular Dystrophy and possibly Ehlers Danlos Syndrome. So the muscle disease can explain the muscle pain. It doesn't explain the bone pain I get in my spine, though. But a connective tissue disorder would seem a logical explanation for MY scoliosis. Right now I'm pretty much hating this. I have a lot more testing to go through to determine exactly which muscle disease I have.

    Have they tested you for anything like that? I'm not suggesting by any means that everyone with scoliosis and/or pain has muscle disease. It's just a thought. I hope you find something to make you feel better. You are completely right about sitting in front of a computer. Have you considered using a laptop and laying in a recliner using pillows as necessary to support the parts of your body that need more support? I have an adjustable bed that I put in a recliner type position while I use my laptop. It helps tremendously with the strain. I don't even use my desktop anymore, except for about once a month. It's not even hooked up to the internet anymore. LOL

    Thanks for updating us. I hope you get things figured out soon.
    I have both desktop and laptop computers. My table has some kind of shelves where you put flowers, etc, so I have put the laptop there and I am using it in a standing position. Of course after some hours I could get some neck tiredness but the position is overall quite comfortable. It could be argued that its a bit easier to feel tired after some time, but that is the signal when rest is needed. And while sitting on a chair I don't really feel when its time to rest which causes pain. I think for such people with spine diseases are necessary special tables with adjustable heights. I was actually thinking to make a design project out of this(I am a design student). But its necessary to take into account that some ill people might not be able to stand. Still I think that adjustable height might be good.
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    Attachment 1494 Sagittal plane

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