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Thread: Confused

  1. #1
    Join Date
    Feb 2005
    Location
    Wales, UK
    Posts
    28

    Confused

    Hi,

    I went to see my consultant last Thursday and left feeling more than a little confused!! I didn't end up seeing my usual doctor as he was busy and so I saw the Registrar instead. I have a few questions and was hoping to get some advice.

    The doctor said that I still have a 55 degree kyphosis curve after my surgery (May 2004) but that my scoliosis curve looked much straighter. He told me that I couldn't possibly be in pain with my back because research has shown that you can't and don't get pain from scoliosis and kyphosis! Is this true? because I am constantly in pain even though I am strong pain medication and am now worried that there must be something wrong for me to be in this much pain all the time. I am also completely numb across my chest and back and my back is extremely painful to touch (it feels like it is being ripped apart-I know it sounds disgusting, it was the only way I can think to describe it.) The doctor told me that it wasn't normal to be numb but that they weren't prepared to do anything for me as my first operation had been a failure and there would be no point (those were his exact words!!) (I have also had all the metalwork removed as it was causing me pain May 2005)

    Is there anything I can do?
    Is what the doctor said true (that there would be no point in operating again)?
    Is a 55 degree curve post surgery a good result (I'm not sure what it was before, but to me it looks as if it is worse not better)?
    Is anyone else still numb after nearly a year and seven months post-op?
    Can anyone from the UK give me any names of a consultant I could try to get a second opinion? I live in South Wales.

    Sorry for all the questions and the long post, I just really need some advice.

    Thanks
    Laura

  2. #2
    Join Date
    Sep 2006
    Posts
    416
    Hi Laura,

    I'm sorry to hear of your frustrations and pains. Unfortunately, your doctor is incorrect. Scoliosis and/or kyphosis can cause minor to severe pain. Claiming that a moderate or severe curvature of the spine doesn't cause pain is like say your arm is not a part of your body.???... absurd

    As for the research stating otherwise... That is one of the most rediculous things I've ever heard (I'd demand to see those studies if that's what he/she is going to use as an alibi. And even then, they don't hold an ounce of water as far as truth goes. There is plenty of research to prove otherwise!)...... Anyhow, I'd encourage you to find another doctor with more competence and compassion than this one. I'm not attempting to discredit the possibility of something else going on, but the pain is attributable, to some degree, to your kyphosis.

    As far as the numbeness... I'm working with someone currently who had a single harrington rod implanted over 20 years ago (57 degree Thoracic, lateral deviation/rotation). She still has numb points throughout portions of her spine and into the back of her pelvis. All of which occurred immediately following the surgery. Others have presented with similiar situations. Again, you might want to consider finding another doctor/surgeon. The good news, she hasn't found it to be particularly problematic.

    All in all, keep your spirits up... there are very intelligent doctors out there who can probably help you to some degree, so I'd encourage you to look. You deserve more respect and compassion than your current doc has shown. Remember, doctors are people too, they don't have all the answers, all of time. But don't let this doctor's ignorant demeanor get you down.

    Best of luck and wishes,

    Structural75

  3. #3
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Hi Laura...

    Many people with scoliosis don't have pain, so it's not actually the scoliosis that causes pain. It's the things that are caused by scoliosis (disc problems, facet problems, etc.) I think we can all agree that it's sort of a stupid comment.

    The pain you describe is not normal. And, I don't think I've ever heard anyone describe being numb in the chest. I don't really know how your healthcare system works, but I'd encourage you to try to get another opinion.

    For the record, normal thoracic kyphosis is 20-50 degrees, so I'm assuming that yours would be considered mildly abnormal.

    Hope you can find someone who knows what they're doing and will pay attention to you.

    Regards,
    Linda

  4. #4
    Join Date
    Sep 2006
    Posts
    416
    Laura,

    Laura, what you are experiencing could very well be explained by a qualified Doctor (possibly arising from the surgeries and/or kyphosis aggrevating the sympathetic trunks feeding the intercostal nerves, for instance). This would not be unusual given the circumstances, and it does happen more often than Linda is aware of.

    Sounds like the general consensus is to get a second opinion overall. Good luck to you.

    Structural

    Linda -

    You stated:
    "Many people with scoliosis don't have pain, so it's not actually the scoliosis that causes pain. It's the things that are caused by scoliosis (disc problems, facet problems, etc.)"
    ... There are numerous people out there (with/without scoliosis) who have been shown to have bulging, extruding, collapsed or herniated discs but have NO symptomatic signs of pain or dysfunction. As we are all aware, these conditions CAN cause minor to severe pain/dysfunction in those who have them, without secondary causes necessary. Furthermore, there are people with NO visible signs of spinal abnormalities who live with chronic or acute episodes of pain. (Yes, studies have been done to prove this)

    So, just because some people do not exhibit painful symptoms, it does not mean that the condition in question cannot potentially cause them. Scoliosis or excessive kyphosis (Scheuermann's Kyphosis) alone, without secondary complications/conditions, absolutely can cause pain. It is clear that you do not fully understand the mechanisms behind pain, so please stop making this false assertion (I realize you probably came to this understanding via the opinion of doctors, I've heard them too. But there are also doctors who believe the opposite. It just depends on who you ask combined with clinical experience.)

    We are human beings, not machines! We don't need to break or damage a "part" to experience pain. No two people are alike in how their body responds, adapts and compensates to these conditions. Although there are commonalities between them, their response is unique to themselves and the circumstances preceeding and surrounding.

    Laura is going through a lot at the moment, and I agree with you, it seems most appropriate to seek a second opinion from a knowledgable and caring doctor/specialist. It's probably best to leave these things up to the professionals. Right now she needs to know that there are others out there who do in fact share a similiar experience and that there are doctors/practitioners who can probably help her. We don't need to add further mystery to an already confusing subject with inaccurate info.

    Linda, you offer a great variety of resources and advice for folks. You seem like an educated patient/person and I think that's important. Yet at times it seems you tread in water that is too deep for your level of understanding and qualifications which leads to misinformation. Sometimes misinformation is worse than none at all.

    In several previous posts you've gone so far as to discredit chiropractics and others without warrant. There are good practitioners and less than adequate in every profession, but don't slander an entire discipline simply because it didn't work for you or someone you know. I'm not a chiropractor, but I will defend the few skilled and ethical ones out there... it has its place. What qualifies you to give such definitive and medically oriented advice?

    Let's keep it pure and within the scope of our knowledge and understanding.

    Regards,
    Structural...

  5. #5
    Join Date
    Jan 2006
    Location
    Tasmania
    Posts
    259
    Hi. I agree with a little of what you have told Laura, structural75 and my heart just goes out to her. Laura I still have numb places in my back honey especially over near my left shoulder blade between that and my spine. As for your pain that is utter rot to say you cant get pain from your scoliosis or kyohosis as I was originally diagnosed with pain and that is what made them aware that I had scoliosis.

    I have found that we are all different, and experience different sensations. Our scoliosis causes pain in other parts of the body that is called referred pain and I have life experience on this, so it may not be the actual scoliosis that causes the pain but what is associated with it as Linda Racine said.

    I see you have had all your hardware removed as well and from what I have read from other peoples experiences when they have had that done there has been problems after as well from that.

    You really need to go to an adult scoliosis surgeon/specialist as dear just because your first operation has not been a success does not mean that there is nothing that can be done. Please keep your spirits up. A lot of us and I mean heaps of us have been to doctor after doctor and have just kept plugging away until we find some one that will listen to us. So that is my advice, and please dont be scared you will be fine I am sure and I will pray for you.

    I am not a doctor ,not associated with the medicial profession and therefore my opinions are my own. But Structural75 I did think that you were unnecessarily a bit smart and catty to Linda Racine and there was just no need for it. She has been a tremendous help to too many people to name, on this site and many others.

    She has recommended excellent doctors, sites on the Internet and any way that she has been able, she has done her very best to help. I am one of those people who are extremely grateful to her.
    This is not a site when putting down people goes down very well, at least not with me, whether your intentions are good or otherwise.

    As for chiropractors I have read literally hundreds of posts from people who have gone and spent a fortune on them and in the end have always had to go to an orthopaedic specialist anyway. Sometimes admittedly people have been helped, but in those cases their curves have only been minimul to start with.

    We are all here to support each other and to feel we arent alone. Nearly all of us in fact I think is would probably be close to 100% of us can draw from life experience and what has happened to us and therefore help people in that way.

    I have not meant to offend any one with this post, but I feel at my age I earned the right to say what I think.


    God bless
    Lorraine.
    Last edited by macky; 11-17-2006 at 08:40 PM.
    Operation 1966, Fused from T4 to L3, had Harrington rods inserted. Originally had an 85 degree Thoracic curve with lumbar scoliosis as well but had a good correction.
    Perfectly normal life till 1997 but now in a lot of pain daily. Consider myself very fortunate though.

  6. #6
    Join Date
    Sep 2006
    Posts
    416
    Macky,

    I apologize if that posting was read with negative grit. It is not my intention to put anyone down. I acknowledged Linda's efforts, as you mentioned as well. My posting came as she continues to follow up the few posts I have offered with her own contradictions and opposition. That's always fine by me, differing opinions keep us engaged and curious. However, if the info is simply incorrect I feel it's appropriate to clarify. Again, I apologize, particularly for my last remark on her "qualifications". I realize that was an antagonizing remark.

    1. Let me clarify... chiropractics has very limited use, if at all in structural cases... More useful at acute times for functional cases. But I did not suggest it as an option for the correction of curvatures... merely for the management of acute pain (which I believe was the topic of the threads I have been responding to). Moving bones in isolation of the soft tissue is rarely ever an effective long term approach for anyone.

    2. Yes, pain associated with scoliosis can be primary to it - soft tissue dysfunction, peripheral nerve irritation, visceral restrictions/immobility, etc... as a result of the lateral deviation and subsequent imbalance in tensegrity of the tissue. Or secondary - articular facet syndromes, arthritis, spondylosis, stenosis, disc degeneration, herniation, nerve root impingment, etc... from excessive compressive forces throughout the body and such. It simply upsets me to hear people being told repeatedly that their pain is unrelated to the scoliosis. If they are aware that it may be directly or indirectly linked they CAN get effective help to manage, minimize and sometimes alleviate the pain without going through unnecessary explorative surgical procedures, taking more drugs, wearing forceful devices. My intention is to point out that there are causes and options that most are not readily aware of because it doesn't circulate through the mainstream traditional "U.S. studies and research" groups.

    It seems we're both on the same page Macky. Maybe the confusion here is coming in part from our definition of scoliosis. I view it as a condition of the whole body, including the spine. When the spine deviates as such many functional movement patterns are altered, putting more or less strain in various regions of our body, including the viscera. It may end up affecting physiologic function, etc, etc, etc... If folks begin to look at this condition a little differently as I did in MY body, then maybe they can come up with some new answers for their individual situations. Otherwise, it sounds like a pinball game where everyone is getting bounced around to the same conventional treatment strategies, but expecting different results each time. I'm only attempting to shed a different light on the subject.

    Best Regards and Peace,
    Structural75

  7. #7
    Join Date
    Jan 2006
    Location
    Tasmania
    Posts
    259
    Thankyou for your reply structural. I get frustrated as I have been to osteopaths, chiropractors to be looked at and also to the alternative practitioners and the like for pain, bad pain, and they honestly run the other way. I have been to them all over the land and have had the same reaction. I look on scoliosis as affecting the whole body as well, its a matter of having to as the whole of my body is in pain 24 hours a day 7 days a week.

    I have had every type of injection, facet join, epidurals and the like and more but have never had any relief. I dont really mind the pain you see as I am so very happy to have been operated on in the first place and because of it have a loving family and a good life. I try to live with pain with the help of really strong pain killers, which I absolutely abhor taking but have to.

    What did you do as far as your body is concerned, as it appears you must have had scoliosis, are you in pain?
    I will have a look at your previous posts and see, they may explain so you dont have to go through it all again.

    god bless
    Macky
    Last edited by macky; 11-18-2006 at 05:48 AM.
    Operation 1966, Fused from T4 to L3, had Harrington rods inserted. Originally had an 85 degree Thoracic curve with lumbar scoliosis as well but had a good correction.
    Perfectly normal life till 1997 but now in a lot of pain daily. Consider myself very fortunate though.

  8. #8
    Join Date
    Feb 2005
    Location
    Wales, UK
    Posts
    28

    Question Update

    Well I have been back to see my GP and after a seven month wait I have finally got another appointment to see my surgeon (In May). The GP has been really good though and has tried so many different types of pain medication I don't think I can remember them all. Currently I am using Durogesic Fentanyl patches, they take the edge off the pain but they make me really dizzy for the first day after I change it (every 72 hours). I also tried acupuncture but unfortunately for me it was unsuccessful, he said I had some sort of blockage that is stopping it from working.

    Now I am wondering what to say when I go to see my Consultant (I am hoping that I get to see him and not someone else this time). I am scared that he will say the same as the last man (that I can't be in pain, BUT I AM!!)

    What should I say to him? I really want to get this sorted as the pain has made my life miserable, I want to be able to live a more 'normal' life.

  9. #9
    Join Date
    Feb 2005
    Location
    Wales, UK
    Posts
    28

    Question Second Opinion

    Hi,

    Well the appointment I had was cancelled after waiting seven months for it, with no definate date to go back. All the letter said was that they'd be in touch in the future.

    Does anyone know of any surgeons in Wales or even England that I may be able to go to for an opinion? I would really appreciate some help as I don't know where to start looking.

  10. #10
    Join Date
    May 2006
    Location
    Near Houston, TX
    Posts
    495
    Have you tried this forum? I think there might be more people there from the UK.

    http://www.scoliosis-support.org/modules/ipboard/

    Hope you get some help.

  11. #11
    Join Date
    Feb 2005
    Location
    Wales, UK
    Posts
    28

    Unhappy Some advice needed

    I finally got to see my consultant (although I had to pay to see him privately, as I have no medical insurance) and it wasn't a very positive outcome. Now I'm really worried about what's going to happen next.

    When I went to see him I was limping quite badly because my pain goes all the way from the bottom of my back down through my left leg and into my foot. He said that it wasn't very good to see me in that much pain two years after the last operation (which he couldn't remember doing to begin with!!) He asked me a few questions and said I haven't done a very good job then I have I?! Then he said that there was definately something affecting the sciatic nerve and he asked me how my neck was (I had torticollis, a tightening of the muscle in my neck, also) and I said that it was much better than before and he said that it was one thing he had got right then!! I was a bit disheartened by this point. Then he went on to tell me that the correction that he had done approximately 3 years earlier had definately moved and looked like it was curving again, it must be quite noticable as he did it without looking at any x-rays. I'm going for an MRI scan on thursday.

    So now I am almost back to where I was three years ago and I don't know what's going to happen next. I'm beginning to wonder if it's worth all the heartache and recovery to have another operation when the first two have done nothing but give me more pain than I had orignally.

    Sorry for the long post but I don't know who else to talk to, my parents are trying to be as supportive as they can but they don't really understand how I feel. I would love some advice from other people who have had a similar experience.

    Thanks

    Love Laura

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