Scoliosis Update - Aoife are you out there....

[Mayk]

I just want to post anupdate about DD. As of last week we have elected to proceed with the surgery for her curve. Sadly, the brace did nothing to help stop the progression of her curve. From October to April she had stopped growing but the curve continued to advance (not good). She continues to have signficiant pain in her shoulders from the Thorasic Curve and now the upper curve just below her neck has also started to advance where it had been moving very slowly. This upper curve has raised her shoulder and also tilted her head. Her thorasic curve (middle of her back) is now at 48 degrees and it likely still moving. The top curve advanced past 35 degrees moving the most from October '12 to April '13 since we started tracking her measurements on a six month basis two years ago.

She is very anxious, as you can imagine, but she is also very resolved that this is what she wants to stop the pain and to correct the disfigurement she is experiencing now with the raised shoulder and one side of her back beginning to protrued as her ribcage is twisted with the spinal turn. The surgeon has been awesome in helping us come to this decision. We are still going for a second opinion but will have the surgery on the calendar when we go, as we expect to get similar if not identical feedback regarding the progression and recommended actions to correct it.

The good news is she is out of her brace to rebuild her core strength, she will get to go to summer camp which she loves and the surgery hopefully will be early enough she will only miss one-two weeks of school. She told me last week that she was the happiest she had been in a long time (I also just took care of the bullying for the last time and pulled her from a class that was out of control)... She's happy to be 6 days shy of being done with Middle School and ready to go into surgery and then get on with her life. So... prayers and dust.. PSer's.... we need a lot of both!!!

If you have stories you can share.. please do. She's been all over the internet reading. Thankfully, almost everything we read is pro surgery for curves this advanced. Very little downside except getting through the first month or two after the surgery.

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[Aoife]

Ah, Mayk, I'm so sorry that the bracing didn't work for your daughter. I did wonder if it would, based on what you had described as the location of her curve(s).

Everyone I know who had the surgery has done really well. There can be issues over the years, but I haven't heard anyone regret it. It sounds as though your daughter has such a fantastic attitude towards it--I'm so happy for her! She really has been an extraordinarily brave young woman, and you've been an awesome mother. You're lucky to have each other!

Do you know if the surgery is going to be anterior or posterior, or what instrumentation they are going to use?

And, we need an update on the bullying.....

 

[Mayk]

Hi Aoife!!!

We don't know many of the details yet. I do believe he will use steel rods and he will fortunately go in from her back. The tough part is how high he will have to go to take care of the curve at the top. He wrote the order last week and we haven't actually been scheduled yet. They will call us this week. Then we will also be scheduled for all the pre-op stuff which includes all the in depth discussions about the proceedure and what we can expect and how to prepare. I'll keep you posted.

Bullying.. I've learned a lot this year. DD's biggest challenge was a 1st period class where the first teacher was so bad she let the students run the class. This is the teacher I complained about and she was let go shortly after the bullying incident. The second teacher lasted a week. They have now put a substitute in the class to get them to the end of the year. This substitute is a retired teacher who is more interested in being friends with the kids, bringing in clothes for kids not in dress code, breakfast for those that didn't get to eat and allowing students to enter attendance and grades in the school computer from her class. She was allowing students skipping other classes to sit in on her class. During one of these morning there were two students skipping class and one has in the past bullied DD on the bus and was caught on camera and expelled from the bus. Well she was in the class that morning and decided she would bounce stuffed animals off DD's head while touching her hair repeatedly while being coached by the bullies I had reported. When DD got home I told her she would not be going back to that class. I was at the school the next morning and told the Dean and GC they had one choice to move her or I was headed to the school board that morning. I wasn't quite sure why the couldn't find a teacher that could or was willing to control the class but it wasn't my problem anymore with a month left of school my only problem was getting DD out of the class and they could deal with those kids in their own time. She was moved immediately. There has never been one issue since. She comes home happy everyday. No begging not to go to school. In a way, I'm mad at myself that I let the school try and handle it, I should have gone back in there sooner but waited for it to escalate again so I really had a reason to dance on someone's head...which is what I did. The sad part.. this temporary teacher asked DD about what happened and when she told her she defended the worse bully of all. I wrote another note to the Dean and told him that teacher was to stay away from DD as she was as much a part of the problem as the out of control teenagers... Did I mention we are so glad Middle School is over.. so glad.

I went to my regular meetings with all her teachers about three months ago and I asked each and every teach about her behaviour in class and each teacher told me they wished they had a classroom of my daughter. While she asks a lot of questions she is quiet in class, does what she is asked and doesn't disrupt the class. This was a huge comfort for me. I know she's a good girl but we all have teenagers and the kid they told me of.. isn't always the one I see.. because at home they can be so different!!!

New school next year, new county, hoping for a great start. I'm sure there will be those bullies but hoping she's not a target without her brace.

 

[yennyfire]

Mayk, sorry to hear that the brace wasn't successful, but glad that you have a plan in place that will hopefully have a pain free life for the future.

As for the bullying, good for you! Sometimes you have to be forceful about what you want to happen and everyone else be dam*ed! I hope that next year is a great year for your daughter (and you!)!

 

[Mayk]

Mayk, sorry to hear that the brace wasn't successful, but glad that you have a plan in place that will hopefully have a pain free life for the future.

As for the bullying, good for you! Sometimes you have to be forceful about what you want to happen and everyone else be dam*ed! I hope that next year is a great year for your daughter (and you!)!

Thank you Yenny! It's been a long year... But it's behind us in five days!

 

[Aoife]

So glad you got the bullying sorted! Just a few more days, and then you can both enjoy the summer. Thanks for the update.

The Harrington rods seem to be the most common--or were back when I was actively tracking this stuff. There's also another type of instrumentation that not only straightens the spine, but reduces the torsion, too. I think there are a couple of versions of that, actually. Please post when you know more.

 

[JaneSmith]

I'm so sorry the brace didn't work as hoped. I hope this surgery goes well and your daughter recovers quickly and is pain-free afterwards.
I cannot believe the crap she has had to endure, and how useless the teachers were. Well done to her for having the strength of character to still be a good student. And well done to you, mama bear!
I'm glad the awful bullying is behind you, and that your daughter is happy and looking forward to the summer.

 

[NewEnglandLady]

May, I know it feels like you have a long road ahead of you, but it will all be for the best.

I wore a brace for 2 years (ages 7 - 9) and it did nothing. I ended up having posterior and anterior Harrington rods from C4 to L2 at age 9. So essentially, my entire back has been fused for the vast majority of my adult life.

My recovery took 2 years because the surgery was more risky due to my age. I don't remember it being particularly painful, but I do remember really struggling with my balance. I was used to being crooked (I had 2 curves and one was over 90 degrees, so my spine was turning in on itself), so suddenly being straight wreaked havoc on my balance.

I'm sorry about the bullying. When you're different, you're picked on. Unfortunately. I got the nickname "turtle" when I had my brace and my classmates still called me that in high school. For some reason it never bothered me.

Oh, and I have to say that my rods haven't caused me much discomfort as an adult. My doctor doesn't want me to do any "jarring" activities (like running), but I'm still active. My biggest concern was having children because I was afraid that the extra weight might be hard on my back. I have a 15-month-old now and have to say that my pregnancy seemed "normal" in terms of pain. I kept my weight gain to a minimum (per the orthopedic doc's request), but my rods didn't cause any discomfort. The only hangup was that I couldn't have an epidural, but that was mostly because I have a shunt in my spinal cord and not due to the rods.

Thinking of you and your daughter and will look out for updates!

 

[Smith1942]

Mayk, I am so, so, so sorry to hear of your daughter's health struggles. That must be incredibly stressful for you all. I am never sure whether it's worse to be the patient or worse to be the helpless bystander, in these situations. My heart really does go out to you. I wish I could say something more helpful. Winston Churchill said, "If you're going through hell, keep going."

Judy Blume wrote a great book about scoliosis, entitled "Deenie". It's fiction, about a young teen who has the condition. It's a really good book and definitely illuminates the issues faced by youngsters with the condition.

And well done for standing up to the school! I went to a terrible primary school (age 4-11) which was full of elderly teachers who seemed bent on bullying the kids. My mother had to go and scream at them on numerous occasions when my sister and I arrived home in tears. Secondary school (different one, 11-1 there were no problems at all so it was definitely that awful school. It is amazing to me just how much parents have to intervene with schools. The schools' very reason for being is the care and education of children and yet they don't seem to have a clue. So well done you!

You and your daughter are in my thoughts xxxx

 

[Skippy123]

Mayk, you are an amazing momma. I am so sorry you and her went through this bullying. I will keep her in my prayers for her surgery and hugs

 

[Mayk]

Smith, Jane, NE Kady and Skippy...thank you... The support and prayers are so welcome! Thanks for sharing your stories...the all help!

 

[diamondseeker2006]

Ah, Mary, I am sorry you all have to go through the surgery, but I SO hope it has a wonderful outcome for your daughter!

And what a super Mom you are to tell that school what to do to remove your daughter from the bullies! I know how horrible that can be and you are very right to deal with it!!!

 

[mary poppins]

Sorry to hear the brace didn't work for your DD and she has to have surgery. Between middle school and high school is a great transition time to have it done, though. Out with the old middle school bullies and in with the new students and no brace.

I thought you and your DD would appreciate this inspirational, scoliosis-related story.

http://www.cnn.com/2013/06/06/health/human-factor-lewis/index.html?hpt=hp_bn13