Marfan Syndrome Management: Back to Basic 19:14-20:23 And what about non-cardiac surveillance and treatment? 心臓以外の所見に関する検査と治療について説明します。 We recommend serial ophthalmology evaluations in children. It's every year. I…

Living a Life with LDS (September 12, 2020) E3 Summit 1:18:18-1:23:47 Q:Just I guess thoughts on ways to manage chronic pain in LDS at different ages and I think particularly as people age and, and start getting into arthritis and things l…

Managing Pain 52:41-53:36 Q:How about pain after surgery? 術後の痛みにはどのように対処すればいいですか？ A:So pain after surgery is common and one of my jobs I actually work in a post-operative clinic where we're addressing acute or chroni…

Managing Pain 52:13-52:33 Q:I'm going back to steroids now. I'm somebody's asking if steroidal shots are contraindicated with connective tissue disorders. 結合組織疾患では、ステロイド注射は禁忌でしょうか？ A:In general, not. And we have, I…

Managing Pain 50:00-50:53 Q:What about if you're also taking like an antidepressant or antianxiety medication at the same time, like something to worry about? 抗うつ剤や抗不安薬をオピオイドと一緒に飲んでも大丈夫でしょうか？ A:In general, n…

Managing Pain 43:38-45:08 Q:Where do you where do you start, I mean, if you, you know, what's the first doctor that you'd go to, Dr. Speed? If you have, if you have Marfan, you have, you have, a related disorder, and, you know, you have al…

Managing Pain 42:17-42:57 Q:Somebody, so they just started taking tramadol and receiving steroid chest, and their shoulders, hips, and lower back. Is this common? トラマドールやステロイド注射を受けている方がいらっしゃいますが、そういった方…

Managing Pain 41:33-42:11 Q:Here's another question about children. Is there any evidence to show that physical and occupational therapy can help children, particularly preteens, avoid, to avoid developing pain? That's a different kind of …

Managing Pain 40:24-41:30 Q:I also had some questions ahead of time about treating pain for dural ectasia in the Marfan population. So can you comment on that? マルファン症候群の硬膜拡張による痛みにはどのような対処法がありますか？A:Sure un…

Managing Pain 38:49-39:33 Q: Here's a question about managing chronic pain in children with Marfan syndrome. What are the best practices or what do you recommend to, to younger population? マルファン症候群の子供の慢性痛はどのようにして管理…

Managing Pain 34:00-32:28 So with that said, I'm just going to end with a few final thoughts and that is that pain is real and each individual's pain experience is unique and that's why we have to understand who a patient is and what their…

Managing Pain 32:40-33:59 So lastly, I just want to also mention that self-efficacy is really important and that's that belief that when you're investing in your your own care and you're investing in your own rehabilitation, that, it can b…

Managing Pain 31:47-32:39 And another strategy is progressive muscle relaxation and this strategy involves kind of tensing and then relaxing the muscles progressing throughout the body and I usually ask patients to start with their feet an…

Managing Pain 31:03-32:39 Of course, something that's more straightforward is just deep breathing itself and to be honest, most patients I talk to in clinic about using deep breathing for relaxation tell me that it's not always really help…

Managing Pain 29:37-31:03 As I pointed out earlier, biofeedback is a technique that is less commonly used and might be due to your kind of lack of education about it as well as lack of availability. 少し前に出ましたが、バイオフィードバック…

Managing Pain 28:21-29:36 So in terms of research, unfortunately there's no specific studies within Marfan syndrome, about which techniques may be best, but in general, if we think about chronic pain patients, we know that relaxes, relaxat…

Managing Pain 27:34-28:19 And of course, relaxation definitely has a role in chronic pain, so different relaxation strategies include kind of guided imagery and the overall arching theme of relaxation is to help consciously kind of allevia…

Managing Pain 26:07-27:32 So my personal favorite approach to managing chronic pain is technique called cognitive behavioral therapy and for those who are unaware of that, it is a therapy that is revolved around the idea that our thoughts,…

Managing Pain 25:21-26:06 And I also ask patients to kind of collect a toolbox of different tricks and different therapies because there's times when one approach may be really effective and then there's another time when the pain is reall…

Managing Pain 23:25-25:18 And often, in order to do that, we need a team. So just like our superheroes these days are fighting their arch-nemesis using groups and people with different skill sets, we need to think about that same kind of a…

Managing Pain 22:33-23:22 And of course, we definitely need to focus on non-pharmacological approaches to manage pain as well. And again a lot of it about kind of educating about how these approaches can help manage pain. 痛みに関しては薬…

Managing Pain 21:38-22:27 And the first-line treatments, in addition to the over-the-counter treatments, when they're appropriate, that I tend to use for pain are medications that we call neuromodulators and that's a fancy word for saying …

Managing Pain 20:17-21:36 So when thinking about medications, there's lots of different ways to target pain and again oftentimes individuals with chronic pain are experiencing pain because of different signaling pathways in their body and …

Managing Pain 19:05-20:14 Now one of the important things to think about in pain management is, like I said before, there's not just one pill or one treatment strategy that can usually manage chronic pain, so it really does take a multi-mo…

Managing Pain 17:36-18:59 And again, there's very limited research on kind of opioid use in Marfan syndrome. So this was some other data that we've recently published and this shows that of the patients who, at the time of the survey, said…

Managing Pain 16:51-17:32 Now, of course, we're in the middle of what we classify or call the opioid epidemic and so this is currently a very hot topic for individuals with chronic pain. 私達は現在、いわゆるオピオイド蔓延問題の真っ只中にい…

Managing Pain 15:20-16:47 And then, this is a subsequent study, follow-up study that I completed with my colleagues at Johns Hopkins where it was a smaller survey of only 218 people, but essentially individuals did say that if you look at …

Managing Pain 13:09-15:17 So as we're thinking about kind of the clinical assessment and what these diagnoses are, that we want to treat, as well as the psychosocial factors that are affecting pain, the goals then become how to develop a t…

Managing Pain 12:25-13:04 Kind of going along with thinking about all of those conditions, as a clinician, what we talk about is kind of formulating the diagnosis or formulating the individuals' susceptibilities to pain. When I say that, I…

Managing Pain 10:28-12:22 So, we all know that chronic pain is difficult; it has a lot of consequences and certainly affects one's quality of life, so the next question is how do we address this and where do we begin? 慢性痛は辛いもので、…