Scoliosis - Introduce yourself and meet others

Posted by Justin McClanahan @JustinMcClanahan, Apr 25, 2017

Let’s talk about living with scoliosis.
As a community moderator of the Bones, Joints & Muscles group, I’ve noticed several members talking about scoliosis, but those discussions were scattered throughout the community. I thought I would start this discussion to bring us all together in one place.

Get comfortable in your favorite spot, grab a beverage of your choice, and let’s chat. Why not start by introducing yourself?

@mlowe

Hi my daughter is 15 with microcephaly and epilepsy she has a 50 degree curve. She wears a brace. What different types of surgery are there? She has the s curve. She’s in verbal and I’m terrified of the surgery!

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Thank you it took me a minute to figure out how to reply. 

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Hi @mlowe, I have a bunch of info for you. Let me collect my thoughts, and I’ll get back to you soon. I think what I have to write will help you better-evaluate this big decision. Please keep an eye out for another reply!

Liked by Ardi

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@kdubois

Hi @mlowe, I have a bunch of info for you. Let me collect my thoughts, and I’ll get back to you soon. I think what I have to write will help you better-evaluate this big decision. Please keep an eye out for another reply!

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I hope that you will please share with the whole group! Thank you!!

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@kdubois

Hi @mlowe, I have a bunch of info for you. Let me collect my thoughts, and I’ll get back to you soon. I think what I have to write will help you better-evaluate this big decision. Please keep an eye out for another reply!

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Certainly! I’m writing it up and gathering photos/images.

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@kdubois

Hi @mlowe, I have a bunch of info for you. Let me collect my thoughts, and I’ll get back to you soon. I think what I have to write will help you better-evaluate this big decision. Please keep an eye out for another reply!

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Thank you so much!! We went today to her Scolosis dr we don’t live near Mayo. He said her Scolosis is 60 plus now. X-ray was so blurry. He said surgery in the fall. I want to get referrals for opinions. She’s special needs epilepsy non verbal. It’s just a very scary decision! What if I make the wrong decision, what if something happens to her? Thank you so very much!!!! 

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@kdubois

Hi @mlowe, I have a bunch of info for you. Let me collect my thoughts, and I’ll get back to you soon. I think what I have to write will help you better-evaluate this big decision. Please keep an eye out for another reply!

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@mlowe, this is a very big decision to make, especially on your own, and having as much up-front info as much as possible makes it easier.

The surgery definitely helped. I’m not sure what different surgeries are out there to treat this. I know this was called spinal fusion.

(Note: I will post photos soon; currently the Connect platform is having an issue with posting images, but they are working diligently to resolve this.)

Prior to surgery: If you decide to move forward with it, they do pre-surgery testing the monitors how her body/spinal cord/nerves work, and record it. It’s painless. They hooked my daughter up to wires on her head, arms, and legs. Then, they run this recording while performing the surgery to ensure that they spinal cord isn’t injured while they are repositioning the spine.  They will also have a pre-op appointment and run labs, just like any other surgery. They also tried to collect her own blood in the event that she needed a transfusion, but they couldn’t make it work as they needed to use large needles to prevent clotting while collecting, and her vasculature was just too small for the needles.

During surgery:  Her surgery was scheduled for 7:30 a.m., and she was in recovery by 4:00 p.m. They estimate how long it will take, but the doctor told us that he will take his time and take as long as necessary to do the job correctly. They called us every two hours to give us updates; they were actually in the operating room about two hours before they even made an incision. They let her bring her favorite stuffed animal into the operating room with her; I think most hospitals do this. That made her feel a lot better!  

The surgery: They inserted two titanium rods using titanium screws. Light-weight yet very strong. Her incision went down the length of her spine from the base of her neck to her waist line. It actually healed so nicely that it’s virtually-invisible now. It was glued shut, so there were no sutures or staples that had to be removed afterward. The nice thing after the surgery was that she no longer required a back brace any longer.

After surgery:  The hospital allowed me to stay in her room with her the entire time. They had her start sitting up the next day, and it progressed from there regarding movement, but after the third day, she wasn’t progressing quickly enough, so they decided to do a blood transfusion; it was amazing how quickly she progressed after that. They taught me how to change her dressings by having me help them in the hospital. After a couple of days, they have a physical therapist come and start having her walk more and doing stairs. (They should ask if she has to use stairs at home.) The requirement to be discharged was to walk a bit, do stairs, and gave a bowel movement, but my daughter hadn’t had a BM yet and they let us go home anyway with guidelines regarding bringing her back if she hadn’t had one by a certain day.

Post surgery (at home): Someone had to be with her at all times for a while. She had to use prescription pain medications for a few weeks, but that tapers down to Advil or Aleve eventually (they like Aleve because it’s longer lasting). Kids usually go back to school at six weeks, but my daughter took longer… they made it clear that every kid is different and to go by how the kid is doing. They aren’t allowed to go back to school if they are taking heavy-duty, prescription pain meds though.

In June 2015, she did fall at school right on her butt — hard enough to knock the wind knocked out of her — so I took her to the doctor the same day.  They said she was fine despite a little bit of a sore tailbone, and that her back is actually the strongest part of her body now.

She’s good now. She does come home every day from school and plunks down on the couch, but her sister does, as well. Sometimes she says that the incision is itchy, but it doesn’t bother her too much. She has more, regular pain from other issues (migraines and peripheral neuropathy in her toes and fingers) than she does from her back. (She’s had the peripheral neuropathy since age 10, and this surgery actually seemed to help a little with this.)

Of course, whatever doctor you see and hospital you go to might do things somewhat differently, or technologies may have changed/improved, but this info should give you a good idea regarding what happens.

As mentioned above, this is a big decision, and you’ve already been through a lot raising a daughter with needs on your own. Hopefully, this info helps; please let me know if you have any more questions.

Liked by Ardi

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@kdubois

Hi @mlowe, I have a bunch of info for you. Let me collect my thoughts, and I’ll get back to you soon. I think what I have to write will help you better-evaluate this big decision. Please keep an eye out for another reply!

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@mlowe and @vickiekay, here are photos associated with my post above.

For the photo of her scar, that was taken December 30, 2014, and her surgery was December 9, 2014. Her scar is virtually-invisible now.

Spinal Fusion_01

Spinal Fusion_02

Spinal Fusion_03

Spinal Fusion_04

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@kdubois

Hi @mlowe, I have a bunch of info for you. Let me collect my thoughts, and I’ll get back to you soon. I think what I have to write will help you better-evaluate this big decision. Please keep an eye out for another reply!

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Wow. I am thankful that the surgery went well and that everything looks corrected! My spine looks like the “before” photo and I am in constant pain…even with meds. Thank you for the encpuragement that this post provides. Xoxo

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@kdubois

Hi @mlowe, I have a bunch of info for you. Let me collect my thoughts, and I’ll get back to you soon. I think what I have to write will help you better-evaluate this big decision. Please keep an eye out for another reply!

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Thank you, as well @vickiekay! It is a very difficult surgery to go through, and it’s had to watch your child be in pain as such a young age, so you wonder if you’ve made the right decision. Knowing what she has avoided in the long run as she ages, thanks to your insight, makes me feel like we indeed did make the right decision. {{{hugs}}}

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@kdubois

Hi @mlowe, I have a bunch of info for you. Let me collect my thoughts, and I’ll get back to you soon. I think what I have to write will help you better-evaluate this big decision. Please keep an eye out for another reply!

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<3 I am thankful!!

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Hello, and thank you Justin for making a discussion about this!

I had a Harrington rod and spine fusion in 1974 when I was 14.
I am 57 now and I have not had problems until now. BUT I didn’t know about “taking care of yourself” and I have always done manual labor, been in a car wreck, did drugs in my youth that kept me up for days. It’s amazing I have done as well as I have.
I went to an orthopedic surgeon last year because of pain, and he practically pushed me out the door, saying “We don’t do that surgery anymore, these days.”
I told him that if I was reincarnated, I would remember his wisdom; but what could I do now? He said he could send me to a pain clinic.

I came here looking for exercises for people with Harrington rods, which I can’t find anywhere. But I feel I should report what that doctor said, even though I don’t want to. BUT he was not a scoliosis expert or anything………and doctors certainly make mistakes also.

One more thing – my back has become more crooked in the last few years, in x rays one can see it also. Curving above and below rod. General prac doc said bone deterioration above and below rod, from time. One leg is now shorter, which I never noticed before. My ribs are what feel scary. I am going to try to google what people mean in here when they say their ribs get dislocated.

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@ardi

Hello, and thank you Justin for making a discussion about this!

I had a Harrington rod and spine fusion in 1974 when I was 14.
I am 57 now and I have not had problems until now. BUT I didn’t know about “taking care of yourself” and I have always done manual labor, been in a car wreck, did drugs in my youth that kept me up for days. It’s amazing I have done as well as I have.
I went to an orthopedic surgeon last year because of pain, and he practically pushed me out the door, saying “We don’t do that surgery anymore, these days.”
I told him that if I was reincarnated, I would remember his wisdom; but what could I do now? He said he could send me to a pain clinic.

I came here looking for exercises for people with Harrington rods, which I can’t find anywhere. But I feel I should report what that doctor said, even though I don’t want to. BUT he was not a scoliosis expert or anything………and doctors certainly make mistakes also.

One more thing – my back has become more crooked in the last few years, in x rays one can see it also. Curving above and below rod. General prac doc said bone deterioration above and below rod, from time. One leg is now shorter, which I never noticed before. My ribs are what feel scary. I am going to try to google what people mean in here when they say their ribs get dislocated.

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@ardi, welcome to Connect and thank you for joining the scoliosis discussion and sharing a bit more about yourself.

I would like to invite @sutherlin, @suee, and @recoverychris to share their thoughts on exercises for people with harrington rods, as well as continued health problems around the top and bottom of the harrington rods.

@ardi, I can tell you have a bit of sarcasm to you when you said you told your docotor, "If I am reincarnated, I will remember your wisdom." I have to admit as a sarcastic person, that gave me a chuckle. You also mentioned that your general practice doctor said he or she has noticed bone deterioration above and below the rod and that one leg is shorter. What has your general practice doctor recommended as next steps? Have you told them about your rib pain?

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I was diagnosed with scoliosis in 1984. I had surgery with a Harrington rod inserted. I was in my 30’s when I had the surgery and I will share I experienced much pain. Now I’m experiencing some heart pain that brought me to ER 3 times over a 4 year period. I saw a heart specialist 5 days ago who ordered a CT Angiogram; my heart is fine, however, the heart pain is musculoskeletal not from the heart. I researched scoliosis and found that my type of scoliosis can move the rib cage and press on the heart and lungs. In my opinion this is what is happening regarding the pain in my heart. I have an appt to see a scoliosis specialist in two weeks. I want to know what I could do to stop the ribs from pressing on my heart. Is anyone else having this problem? As I get older the back pain gets worse.

Liked by Ardi

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Thanks for sharing- I was diagnosed just 5 years ago, just after I retired from the Army- after 40 plus years, my Scoliosis is caused by jumping out of helicopter’s for years in two wars- so the Military and the VA did the research and explained how my spine bend over 30 degrees in one week . hard for me to understand that- my two back doctor’s told me the same thing ( ref: the lungs and heart) and for me to lose as much weight as the doctor would be ok with- I was not over weight, but they still said to try and be about 10-20 pounds under weight, which helps the spine not to continue to increase from weight. Also to try and sleep sitting more up-right and to swim as much as possible. Please don’t think this is my fix all- that’s just what I have been told by many doctors in Phoenix. God Bless and I hope it improves. JJames

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@johnjames

Thanks for sharing- I was diagnosed just 5 years ago, just after I retired from the Army- after 40 plus years, my Scoliosis is caused by jumping out of helicopter’s for years in two wars- so the Military and the VA did the research and explained how my spine bend over 30 degrees in one week . hard for me to understand that- my two back doctor’s told me the same thing ( ref: the lungs and heart) and for me to lose as much weight as the doctor would be ok with- I was not over weight, but they still said to try and be about 10-20 pounds under weight, which helps the spine not to continue to increase from weight. Also to try and sleep sitting more up-right and to swim as much as possible. Please don’t think this is my fix all- that’s just what I have been told by many doctors in Phoenix. God Bless and I hope it improves. JJames

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Thank you Johnjames for sharing your experience. Is your spine curving in the upper spine to the right? left? Or is the curve below the waist line? Or perhaps the curve has created a type of ‘hump’ on your upper back? Each of these types of curves has a different set of exercises.
My spine started curving when I was 15. With 6 siblings I had to wait till I started working to pay to see a doctor. I was told at age 18 that the curve was most likely from polio- but I was never diagnosed with that disease. The dr also told me there was nothing medically that could be done for me. My back pain grew worse after giving birth to my two children. It wasn’t until I was 30 that I learned about scoliosis and that there might be help medically. May I ask a few questions?
Have you experienced any heart pain as of yet?
Did your dr tell you if there was any exercise that could slow the progression of the curved spine so the ribs wouldn’t crush the heart?

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