shinyhappypeople Posted October 12, 2017 Share Posted October 12, 2017 (edited) Tell me everything you know about scoliosis. Doctor is an extremely experienced, well-regarded pediatric orthopedic surgeon. So, naturally I'm second-guessing him. It's just what I do. Can things really go from very mild to severe in 8 months? More testing is coming in two weeks. Edited October 12, 2017 by shinyhappypeople Quote Link to comment Share on other sites More sharing options...
wapiti Posted October 12, 2017 Share Posted October 12, 2017 I am a second-guesser. Only thing I know about scoliosis: it can be a symptom of a tethered spinal cord. (Tethered cord is ruled out by MRI. And no, contrary to the PA orthopedist we saw once for something else, tethered cord is not found only in the very young.) Quote Link to comment Share on other sites More sharing options...
bethben Posted October 12, 2017 Share Posted October 12, 2017 It depends upon muscle tone a lot. It also depends on growth spurts. A growth spurt can make it worse. My son had horrible muscle tone in his back (disability-not normal). My son, even when he had a brace got to a point of no return which meant it could not be supported with a brace anymore and would need surgery. You can always ask how it could happen. Ask what is the least invasive procedure to try first. Back braces are so much less noticeable than they were when we were kids. Sent from my iPhone using Tapatalk 1 Quote Link to comment Share on other sites More sharing options...
DawnM Posted October 12, 2017 Share Posted October 12, 2017 Following. My youngest was diagnosed but the doctor didn't seem to think it was a big deal, so many it is mild at this point (DH took him, I would have gotten more info!) To be honest, I had forgotten about it. Bad mom I know. Surgery sounds pretty severe. Quote Link to comment Share on other sites More sharing options...
hornblower Posted October 12, 2017 Share Posted October 12, 2017 I understand it can progress quickly during growth spurts, particularly around puberty. It is in my family - incl a relative with a pretty severe untreated case - and myself and all my cousins on that side were monitored regularly. As a kid, it seemed like every single one of my dr visits included detailed manual palpation of my vertebrae and standing in front of a string with a suspended weight on it. I'd go in for a chest cough and have to show my spine.... One of my cousins had the surgery. 1 Quote Link to comment Share on other sites More sharing options...
Tess in the Burbs Posted October 12, 2017 Share Posted October 12, 2017 My son was fine, we will recheck in 6 months to oh crap his spine is now twisted in 2 spots and we are desperate to stop this progression. You could tell the Dr was freaked out about how fast things changed. Our bodies grow and Drs can't always expect every potential outcome. I thought 6 month checks were ok. In hindsight I still wouldn't have had any reason to ask to come sooner. We are now just trying to keep things where it is until his spine stops growing...hopefuly in the next few months 1 Quote Link to comment Share on other sites More sharing options...
Selkie Posted October 12, 2017 Share Posted October 12, 2017 I know two girls who had the surgery, my niece and the daughter of a family friend. The surgery and recovery are pretty grueling, but they are both doing well now. Quote Link to comment Share on other sites More sharing options...
cuckoomamma Posted October 12, 2017 Share Posted October 12, 2017 Yes, things can progress quickly in puberty. Schroth therapy and the Cheneau Gensingen brace have been very effective in reducing the degree of curvature and rotation. Will PM you with more info. 1 Quote Link to comment Share on other sites More sharing options...
Plink Posted October 12, 2017 Share Posted October 12, 2017 (I’m fused T4 to L4 for an s curve) As others have said, growth spurts really can change curves fast, but the change can also slow just as abruptly. Change over time is only half of the equation with degree of curvature being the other half. Higher curves tend to progress faster, but that isn’t a guarantee. The “come back and check†process is necessary, and will give the doctor the info he needs. I didn’t catch your child’s age, but I’d expect that the process of making next-step decisions will probably continue for a long while. In general they try not to do surgery until after the body has completely finished growing. The alternative until then is to brace. I went through bracing for many years, and to be honest, it wasn’t a big deal at all. Sure it wasn’t ideal, but it wasn’t noticible to most people, and it didn’t prevent me from participating in any activities at all. Are you going to your doctor’s preferred x-ray facility? Scoliosis diagnosis is dependent on those images, and some places are better at the process than others. Regardless of where you go, Your doctor will probably ask the rad techs to be more specific in their instructions the next time your son gets films done. In case they don’t communicate clearly, make sure to tell your boy that he needs to place his weight evenly on both feet before inhaling for the standing x-rays, whether he is facing front, back, or side. This helps to present a more consistent view of the curve. (Standing on one foot won’t make the curve better or worse, but it can complicate measurement) They may also take more films in general or ask for an MRI. That isn’t a sign of imminent danger, it is just part of the information gathering process. Quote Link to comment Share on other sites More sharing options...
shinyhappypeople Posted October 12, 2017 Author Share Posted October 12, 2017 The doctor said he saw "very mild" scoliosis on the x-rays I brought in from last Feb. He said that it's progressed so far that what he saw on the x-rays didn't match the person he examined today. He said it was severe. We'll see. More tests and stuff in a couple weeks. I'm just trying to wrap my brain around all this. Maybe it's NOT scoliosis. You can't really tell without an x-ray, right? And the radiologist who originally saw the x-rays saw no signs of scoliosis, could draw a straight line through [i can't remember the vertebrae he mentioned]. So it wasn't just a small degree of curve, it was NO degree of curve. But this quack (with decades of experience and a great reputation) is now saying he saw "very mild" curvature, so mild that he wouldn't have suggested she be referred to an ortho. What is he seeing that the radiologist didn't see? [Duh. A slight curve, apparently.] But, still. We don't know anything yet until we get the new x-rays. So we wait. If it's not scoliosis, what the heck could it be? What looks like severe scoliosis on the outside but is actually something else? (We need a "grasping at straws" smiley.) Quote Link to comment Share on other sites More sharing options...
shinyhappypeople Posted October 12, 2017 Author Share Posted October 12, 2017 Oh and he was really insistent that he wanted to see her soon. He would have preferred next week, but 2 weeks was the best they could do. That freaked me out a bit, but also comforted me, because, hey, at least someone is finally taking it seriously. In these parts waiting many months for medical appointments is totally normal. Quote Link to comment Share on other sites More sharing options...
Plink Posted October 12, 2017 Share Posted October 12, 2017 Wait, what? He only had one set of baseline x-rays, and was diagnosing a curve change to “severe†based on a physical exam only? That is beyond odd. I’d look for a second opinion regardless of what you hear in two weeks. 1 Quote Link to comment Share on other sites More sharing options...
Carrie12345 Posted October 12, 2017 Share Posted October 12, 2017 Following. My youngest was diagnosed but the doctor didn't seem to think it was a big deal, so many it is mild at this point (DH took him, I would have gotten more info!) To be honest, I had forgotten about it. Bad mom I know. Surgery sounds pretty severe. Oy. Thanks for the reminder! Dd was dx'ed as "mild" and I forgot the follow up, too. But hers wasn't identified until she was already her current height, and we aren't really expecting much more than an inch or so out of her, if that. Still, gotta make that appointment! Quote Link to comment Share on other sites More sharing options...
Carrie12345 Posted October 12, 2017 Share Posted October 12, 2017 Tell me everything you know about scoliosis. Doctor is an extremely experienced, well-regarded pediatric orthopedic surgeon. So, naturally I'm second-guessing him. It's just what I do. Can things really go from very mild to severe in 8 months? More testing is coming in two weeks. I could see 8 months being a huge deal in someone like my oldest, who had growth spurts like nothing I had ever imagined possible! Without getting up to look at our family height marker, there was a year when I was constantly measuring him and getting giant jumps every month or two. I think he may have grown almost a full foot one year. And he kept having pretty big jumps until he just stopped all together. I'd still get a second opinion on a severe diagnosis. Quote Link to comment Share on other sites More sharing options...
SamanthaCarter Posted October 12, 2017 Share Posted October 12, 2017 (edited) Yes, it happened to me. I was a gymnast up until about thirteen, and then sometime around fifteen we discovered some scoliosis. I began swimming for about a year and then we moved somewhere that swimming was not an option. It was at this point my scoliosis progressed to the point of surgery at 18. Parents and doctors hypothesize that I was so fit I was able to hold off progression for a while. I was at the older end of normal for kids who get the fusion, but the curvature was fine until it rapidly progressed. Sent from my iPhone using Tapatalk Edited October 12, 2017 by SamanthaCarter Quote Link to comment Share on other sites More sharing options...
almondbutterandjelly Posted October 12, 2017 Share Posted October 12, 2017 It can progress pretty fast. You really just need to look at the x-rays. My dd was diagnosed in Dec. of her 9th grade year and was already something like 44 degrees. Her only symptom that we could see was that her rib clicked and pooched out when she raised and lowered her arm. The doc felt around and said it seemed like her shoulder blade was rubbing her rib and sent her for x-rays. Bam. Scoliosis. She was in a hideous brace by Feb. She had reached surgical range by Nov. (55 degrees and he was worried about her internal organs). She got surgery in March (would have been Jan. but lots of sinus infections that winter required us to reschedule surgery.) So in about a year's time, she had gone from "what's scoliosis?" to surgery. So sorry you might be walking this road. Quote Link to comment Share on other sites More sharing options...
SamanthaCarter Posted October 12, 2017 Share Posted October 12, 2017 (edited) Wait, what? He only had one set of baseline x-rays, and was diagnosing a curve change to “severe†based on a physical exam only? That is beyond odd. I’d look for a second opinion regardless of what you hear in two weeks. You can see it. It causes a lump in one side of the back (rib cage sort of lopsided), one hip to rest higher than the other, and in my case, one breast larger than the other. All because you're bent out of shape. Sent from my iPhone using Tapatalk Edited October 12, 2017 by SamanthaCarter 1 Quote Link to comment Share on other sites More sharing options...
historically accurate Posted October 12, 2017 Share Posted October 12, 2017 My oldest just came out of her brace since she finished growing. Her curve stabilized enough that she didn't need surgery. Scoliosis can definitely change that fast - that's why dd was braced. She was really, really close to closed growth plates, but her curve was already at 28 (I think) and he said 40-45 would be possible in a year if he did nothing. I am pretty sure the doctor told us a curve could grow at 2 degrees a month if it's aggressive. Growth spurts make it worse. FWIW, her scoliosis was found at a well child visit, and nothing was noted the year before. As for external signs, dd's shoulders were twisted (one was a lot higher than the other). Quote Link to comment Share on other sites More sharing options...
bethben Posted October 12, 2017 Share Posted October 12, 2017 You need an X-ray for sure. When you see them getting out math tools to measure curve, then it’s gotten worse. Sent from my iPhone using Tapatalk 1 Quote Link to comment Share on other sites More sharing options...
shinyhappypeople Posted October 12, 2017 Author Share Posted October 12, 2017 You need an X-ray for sure. When you see them getting out math tools to measure curve, then it’s gotten worse. Sent from my iPhone using Tapatalk Yes, that's what the follow-up at the children's hospital is for. More x-rays and other tests (no idea what the "other tests" are). It's really apparent just by looking at her that *something* is going on. Her right shoulder is higher and closer in than her left and, especially when she bends over, her shoulder blade forms this really obvious hump. Both of these have gotten more noticeable since last spring. What I'd like to figure out is what - besides scoliosis - could cause this. On her original x-rays (not the scoliosis screen but a different one done for her right shoulder) the one thing that looked unusual was her right collarbone pointed up, rather than being relatively horizontal. So, all this time I've been thinking (assuming) that it was just something funky going on with her shoulder / collarbone. It may still be that. The waiting is the worst part. Once I have FACTS to deal with I become much calmer and focused. The not knowing is stressing me out. Quote Link to comment Share on other sites More sharing options...
Plink Posted October 12, 2017 Share Posted October 12, 2017 You can see it. It causes a lump in one side of the back (rib cage sort of lopsided), one hip to rest higher than the other, and in my case, one breast larger than the other. All because you're bent out of shape. Sent from my iPhone using Tapatalk Sorry for being confusing. I meant that a change from baseline to obviously visually severe over just a few months is odd. (Concerning would have been a better word) When a change is that drastic, it is important to make sure that you know all of your options begore settling on a course of action - that is why I suggested a second opinion regardless of what the doctor recommends. Quote Link to comment Share on other sites More sharing options...
almondbutterandjelly Posted October 12, 2017 Share Posted October 12, 2017 Scoliosis can also cause the spine and ribcage to rotate. So that might be what you saw in the collarbone pointing up situation (if I'm correctly envisioning what you are describing). And the curve can also make the shoulder blades totally uneven and weird. ((hugs)) You'll get through this. Quote Link to comment Share on other sites More sharing options...
SamanthaCarter Posted October 12, 2017 Share Posted October 12, 2017 Sorry for being confusing. I meant that a change from baseline to obviously visually severe over just a few months is odd. (Concerning would have been a better word) When a change is that drastic, it is important to make sure that you know all of your options begore settling on a course of action - that is why I suggested a second opinion regardless of what the doctor recommends. Oh yes! Lots of professional opinions of course! I was just trying to show how a doctor could say "severe" without yet seeing the actual x-rays, not saying that the doctors don't need to see x-rays, MRIs and whatever else gives them a good picture of the situation. Sent from my iPhone using Tapatalk 1 Quote Link to comment Share on other sites More sharing options...
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