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Post by Skellinton on May 9, 2015 0:50:54 GMT
I have scoliosis, but had surgery 30 years ago, so my experience was vastly different then what would happen today. I will say that I wore a brace from the time I was 6 until my surgery, 7 years later. The surgery was much different then now, but all these years later I don't really have any negative repercussions from the surgery. Certain chairs may be uncomfortable due to the back support and my husband lets me have all say when mattress shopping, but those are really not a big deal.
The surgery is obviously very scary, more so as a parent I am sure, but it was preferable to me rather then wearing the brace another 3 years in the off chance my back would improve enough not to have surgery. My curve was very bad though, I think it was over 70 degrees when they did surgery, I know it had doubled from 24 to 48 in under a year which is why we opted for surgery, it was pretty clear it wasn't going to get better.
I am glad you are seeing a pediatric orthopedist.
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snappydog
Full Member
Posts: 171
Sept 11, 2014 22:53:41 GMT
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Post by snappydog on May 9, 2015 0:56:12 GMT
My daughter's curve wasn't noticed until it was 45 degrees. Her curve progressed very rapidly and we were already at surgery level when it was discovered. We always thought she just stood with attitude...LOL!
We were immediately referred to an orthopedic surgeon at the local children's hospital. We missed the bracing window completely and from what I understand it simply doesn't work if the curve wants to progress.
Surgery was highly recommended when her S curve became severe enough at 54 and 38 degrees that it needed to be stopped before it completely compressed her lungs and heart.
We researched other options but time was a concern so we fused her at 15 years old from L3 to T8 to stop it. It was scary and a difficult decision but she is now 21 years old and all is well. She has 2 rods and 14 screws. She was a trooper and amazed us. The hospital stay was almost 2 weeks with 2 days in ICU and they were fantastic about pain management.
Thinking good thoughts for you and your daughter. Pea mail me if you have any more questions.
Sandy
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Post by chaosisapony on May 9, 2015 1:32:35 GMT
I had scoliosis, diagnosed at a school screening when I was 14. I had been telling my mom my back hurt for just over 2 years but she always blew it off as me lying to try to get out of PE. The school had me see a doctor who said I would probably grow out of it and I didn't need a brace or anything. I had sporadic back pain until I was about 16 and none since then.
A close friend of mine has a very large hump on her back because of untreated scoliosis. Hers was so bad that when her mother took her to the doctor to find out what was going on the doctor offered to do the surgery for free because if left untreated it would cause a deformity. Unfortunately her mother didn't take the doctor up on the offer (tip of the iceberg on the stories I have heard about her mom) and now as a 35 year old she is well and truly deformed. She has to have nicer clothes custom altered to accommodate the hump, it limits her reach and causes her a fair bit of pain. She copes well and has never let that deter her from wearing anything she wants or doing anything she wants but she has confided in me that it bothers her and she can be quite self conscious about it.
Obviously not the same situations as yours but I just wanted to post so you can see the different ways it could go.
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Post by Skellinton on May 9, 2015 2:02:26 GMT
My daughter's curve wasn't noticed until it was 45 degrees. Her curve progressed very rapidly and we were already at surgery level when it was discovered. We always thought she just stood with attitude...LOL! We were immediately referred to an orthopedic surgeon at the local children's hospital. We missed the bracing window completely and from what I understand it simply doesn't work if the curve wants to progress. Surgery was highly recommended when her S curve became severe enough at 54 and 38 degrees that it needed to be stopped before it completely compressed her lungs and heart. We researched other options but time was a concern so we fused her at 15 years old from L3 to T8 to stop it. It was scary and a difficult decision but she is now 21 years old and all is well. She has 2 rods and 14 screws. She was a trooper and amazed us. The hospital stay was almost 2 weeks with 2 days in ICU and they were fantastic about pain management. Thinking good thoughts for you and your daughter. Pea mail me if you have any more questions. Sandy Does your daughter have internal rods? I was in the hospital 12 days, 2 days in icu, 7 in a full body cast, 5 with brace. Did your daughter have to wear the brace after her surgery? |
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Post by honeyb on May 9, 2015 4:44:41 GMT
I don't know much about scoliosis, but I have a friend who's daughter recently started a teen support group chapter. If she needs/wants support from peers, check out curvy girls www.curvygirlsscoliosis.com/#!usa-leaders/cb3 |
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Post by chaosisapony on May 9, 2015 4:57:17 GMT
Thanks everyone. Tina, do you remember what degree curve you had. Were you done growing? The doctor seemed very concerned that she still had a lot of growing to do. She only grew 2 inches last year which doesn't seem like rapid growth to me. I don't remember or it was never shared with me, sorry. I know I only had to see our family doctor though, not any specialists. At 14 I was basically done growing. I went through puberty at 10 and have been the same height since I was 12. |
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Post by wiipii2 on May 9, 2015 9:10:07 GMT
I have an S curve discovered when I was about 13 after complaining to my mom for years who blew it off as me being a whiner. *eyeroll*
Anyways, now as an adult my heart and left lung are compressed and I'm developing the lovely hunch back of Notre Dame look. Oh its lovely. I got to the chiropractor and massage therapists to try to keep things as straight and mobile as we can.
But ya it sucks. I should have had treatment. I had a consult with one of the best peds ortho surgeon around and my mom decided not to do anything. I live in constant pain.
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Post by gracieplusthree on May 9, 2015 10:05:38 GMT
I was diagnosed via the schoolwide check in the 6th grade. wore a milwaulkee brace for 2years, 23hours a day and hated the blasted thing.. Still had to have surgery anyway at the age of 12(1986) to get Harrington rods put in. Now I dont have a lot of issues, I do have a lot of lower back pain but its due to arthritis and I dont know if thats related to the scoliosis or not. I had 3 children via natural childbirth--I did have back labor but many have that anyway.
When I had the surgery I was in the hospital 5days after the surgery, missed a couple weeks of school. I can bend and put my hands on the floor(people always seem to think I shouldnt be able to bend or would have trouble) really the rods dont prevent me from doing anything.
I dont know what degree my curves were, I had 2 of them though and the upper one had progressed so much even with the brace on that it was within degrees of causing me to be paralyzed, so surgery it was.
-grace
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Post by Patter on May 9, 2015 10:40:04 GMT
One of my dd's has a very small curve but because she was pretty much done growing at they time they found it, she is fine thankfully. But her sister will have a spinal fusion on May 19th for another issue. We are not looking forward to it as it will be her 3rd back surgery since October 2014. I pray your daughter won't need surgery. Hugs to you!
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snappydog
Full Member
Posts: 171
Sept 11, 2014 22:53:41 GMT
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Post by snappydog on May 9, 2015 10:41:19 GMT
My daughter's curve wasn't noticed until it was 45 degrees. Her curve progressed very rapidly and we were already at surgery level when it was discovered. We always thought she just stood with attitude...LOL! We were immediately referred to an orthopedic surgeon at the local children's hospital. We missed the bracing window completely and from what I understand it simply doesn't work if the curve wants to progress. Surgery was highly recommended when her S curve became severe enough at 54 and 38 degrees that it needed to be stopped before it completely compressed her lungs and heart. We researched other options but time was a concern so we fused her at 15 years old from L3 to T8 to stop it. It was scary and a difficult decision but she is now 21 years old and all is well. She has 2 rods and 14 screws. She was a trooper and amazed us. The hospital stay was almost 2 weeks with 2 days in ICU and they were fantastic about pain management. Thinking good thoughts for you and your daughter. Pea mail me if you have any more questions. Sandy Does your daughter have internal rods? I was in the hospital 12 days, 2 days in icu, 7 in a full body cast, 5 with brace. Did your daughter have to wear the brace after her surgery? Never had a brace or needed PT. We were advised to have surgery early because 15 year olds bounce back quickly. It is true. We did the surgery in April and she was off to marching band camp in July. They had her up and walking in ICU. She has a wicked 2 foot incision scar down her back but other than some back pain during her period she is doing really well. She's a college senior and it really prevents her from doing nothing. We have been good about making sure she has a good mattress but other than that the worse seems to be over. Sandy |
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Post by Patter on May 9, 2015 10:44:43 GMT
snappydog, that is great to hear about your daughter. My daughter will have rods and screws of course too, and we are praying she can go to college in August. Not sure if 3 months out will be enough time for her to go to school.
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Post by traceys on May 9, 2015 14:21:51 GMT
I have S curve, which we discovered when I was about 14, and I realized that when I had on a bathing suit I had more of a "curve" between my waist and hip on the left side than I did on the right. I don't remember what degree it was, but I ended up not having any treatment. I believe that the dr recommended watching to see if the curve got worse, (and then would've recommended surgery) but it seemed to stay the same. I do recall that he felt a brace would only be a temporary fix because I had mostly stopped growing by then.
It didn't really stop me from being active...I was a cheerleader in HS and college. I have had back problems as I have gotten older, including surgery for a herniated disc, but I'm not sure that wouldn't have happened anyway.
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Post by Minty118 on May 9, 2015 15:18:53 GMT
My 15yo DD was just diagnosed a month ago with a 48 degree curvature. She is well past the point of no return with bracing, so it was straight to surgery. The surgery will be in August to fuse from T10 to L4. We were told it had to be done as soon as possible since that once it gets to 45 degrees, it will progress 1-3 degrees a month until she is done growing. She just started her periods two months ago, so they said she has a good two years of growth left. She is not afraid, but upset that she has to give up Irish dance.
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georgiapea
Drama Llama
Posts: 6,846 
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Post by georgiapea on May 9, 2015 15:33:46 GMT
My DH's back bows out at the waist. It's about a 6 inch section of his spine that has a very obvious curve. One of my grandsons has a severe upper back curve.
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Post by Minty118 on May 9, 2015 15:39:49 GMT
My 15yo DD was just diagnosed a month ago with a 48 degree curvature. She is well past the point of no return with bracing, so it was straight to surgery. The surgery will be in August to fuse from T10 to L4. We were told it had to be done as soon as possible since that once it gets to 45 degrees, it will progress 1-3 degrees a month until she is done growing. She just started her periods two months ago, so they said she has a good two years of growth left. She is not afraid, but upset that she has to give up Irish dance. I hope her surgery goes well. Thank you! |
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Post by Patter on May 9, 2015 16:31:10 GMT
Thanks everyone for sharing. I am thankful we found out early. Good luck to your daughter with her surgery Patter. Thank you for the link honeyb. Thank you! We are on countdown mode, and she is ready to get out of her wheelchair! |
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Deleted
Posts: 0
May 13, 2024 16:13:17 GMT
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Post by Deleted on May 18, 2015 19:41:49 GMT
My daughter had scoliosis at age 13. In our state in 5th grade the girls wear a leotard to so on a particular day so the nurse can check them for scoliosis. It was fine in November. Fast forward to March. I am sitting in the pediatrician's office while he is examining my daughter. I am flipping through a magazine when I hear...bend over....oh...let's show mom. My daughter immediately starts crying... Apparently she knew for a while that something was wrong, but because she was a dancer...it was not as noticeable. She bent over and looked like the hunch back. Immediately we went for films. When they put the films up on the screen I thought I would faint. Her spine was 59" curved. Anything over 40 degrees can't be fixed with a brace.
Spinal surgery was recommended but they said it could wait until the fall. I opted at the end of school year so she could recover over the summer. We tried banking her blood before surgery unsucessfully. When she came out of surgery they were all around her bed squeezing bags of fluids into her. Ignorance is bliss at that point...her blood pressure was bottoming out and they were trying to bring it back up. Thankfully it was successful. She has two titanium rods in her back screwed to her spine. She could no longer do contact sports, etc.
They told us it was a good thing that we brought her for surgery when we need. She had curved to 65 degrees by surgery and if we had waited until the fall she would have been in congestive heart failure.
She also had an allergic reaction to morphine and I had to sit by her bed and remind her to breathe for 4 hours....I didn't want to give her narcam (sp?) so that it would reverse the pain killers affect.
Good luck. She is now 27 and doing great!
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Post by chichi on May 18, 2015 20:13:13 GMT
Have you checked out scolismart? www.treatingscoliosis.comI would try that before having the huge fusion surgery I contacted the dr that runs that clinic. I'm not a candidate bc of my spondylolithesis |
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Deleted
Posts: 0
May 13, 2024 16:13:17 GMT
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Post by Deleted on May 18, 2015 20:20:51 GMT
Ihavetoomuchstuff, I am sorry to hear what you had to go through with your DD. Glad to hear it all worked out in the end. Thank you. |
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