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Getting a diagnosis of Scoliosis can be devestating, whether it is for yourself or your child. My son was just diagnosed. He is 14 years old…this is our unfolding story

Intergrated care successfully accomplished!!

If you have read some of our journey from July 15th, 2015 to current, you can see that we are not going solely with the ‘traditional’ treatment mode. Rather than a hard brace we our using SpineCor soft bracing, physical therapy and chiropractic care three times a week. We have Kaiser Permanente insurance and were waiting for an appointment with a Pediatric Orthopedist, which we had on Friday, August 14th, 2015.

Friday’s appointment, waiting in the lobby of the doctor’s office, Matthew and I were both nervous. I had him wear his soft brace, mind you, this is not widely used here in the US. After being lead through to the back office, the nurse measured Matthew’s height, 5 feet 5 3/4inches! This is a 1/4 inch taller than he was three weeks ago! The doctor, Dr. Scott Shoemaker, was young, progressive and very forthright in his exam with humor peppered in there, so I knew he was good at reading patient’s anxiety levels. He was very open and supportive of the chiropractic care and the SpineCor brace. While x-rays were up on the computer he inspected the straps of the brace compared to the curve in Matthew’s spine and acknowledged the thinking behind the placement.

Some of the concerns the doctor had about Matthew’s case were: there is not a family history; Matthew is male; the initial curve is opposite of typical; the upper curve turns towards his heart (not common); in addition to the ‘s’ curve he has Kyphosis (lateral curve) when most have a flat back. He is under the thinking that there may be something causing the scoliosis that is not apparent on the x-rays so he ordered a full spine MRI, which we had completed yesterday. The results will be available in a week, I will update then.

Meanwhile, we are getting ready for Matthew to start public high school. He was homeschooled last year and a 2 day a week charter school the year before that. I have tried to talk him out of it because I feel like having to go anywhere five days a week, 7-8 hours a day should only happen if someone is getting paid to be there LOL! He is adamant and wants to attend so that is what we are doing 🙂

Matthew’s chiropractic care

Matthew has just completed his second adjustment and we go back today for his third. He felt great after his appointment and is really enjoying going to the office. We have him drink a lot of water before and after his adjustments. He did sleep yesterday for about three hours during the day. I was happy he was resting because he has had a very hard time sleeping at night. The reason that I choose this practice was the technology that they use to determine their patient’s progress throughout their chiropractic care.

Here is a video of Dr. Marc Gottlieb discussing the his practice

Along with the scan they did of Matthew, they also took a radiograph of his neck. This is something that was not included in the regular scoliosis series he had done at the medical doctors office. How it was explained to me is if you are holding a chain and twist the upper part of it, the lower part twists as well. So, in thinking about how the spine works, it makes sense to see where Matthew’s neck stands.

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The x-ray on the left was the one up on the view box when we came into the room. I am not a doctor but I was thinking, ‘wow, his neck looks pretty good!’ That is when they put Matthew’s x-ray up…it is the one on the right. They were giving me a comparison of normal and what Matthew looks like. I was shocked. I am 45 years old and have been working in the dental field for 20 plus years and the one on the right is what my neck looks like. Seeing my young son’s neck look like mine was alarming.

We are going to continue with the adjustments three times a week and then at the six month mark, follow up x-rays will be taken to see progress. Dr. Gottlieb and Dr. Mo will redo the scan they took at his first appointment every two months. I am feeling very confident this care will be very beneficial for Matthew.

 

 

‘He’ll get use to it’

No…I don’t think he will ever ‘get use to’ wearing a brace. How would you get use to something confining, strapped, pulling? He has to adjust it after activities or getting up in the morning, taking it off for a shower, putting it back on right after. It reminds him constantly he is different. We talked about when he was first diagnosed and how, in a strange way, it made him feel special, unique, different. Like when you find out that you need braces on your teeth. At first, braces are cool, you can pick colors, not everyone gets braces and because we all feel different and special inside, now we are going to have an outward showing of that. The novelty wears off and we are left with having to modify our lives. If you have braces on your teeth, you can’t bite into an apple or eat taffy, chew gum, you experience soreness after a wire change. With a scoliosis brace you are hot from layered clothes, feel tension on your skin where the straps are placed, strain in your muscles pulling your body in a way that is new and uncomfortable. Matthew has even said that it feels like his insides are being moved. So, ‘get use to’ is too hopeful, too easy, it implies that we are in control of how we feel physically and mentally about this change. Really, the only options at this point is to ‘give into’ the situation, not to fight it, see the big picture, allow yourself to let go. This is something that I, at 45 years old, haven’t mastered. Does anyone master this? A picture, from the post before this, shows Matthew laying on a chair in the living room. That is what he was doing, giving in, trying to put this physical feeling somewhere mentally that he could be okay with it at that moment. I could see it in his body language. This is not a one time thing, ‘Adjustment complete, I have given in and all is good now’. It will creep up again and again, maybe daily, hourly, or possibly he will be fine for weeks or months at a time. There will be no warning or easy solutions that works each time because this is attached to emotion. My giving him sympathy about how he is feeling may be received with a sad face and a need for a hug, but the next time with anger and frustration seemingly directed at me because he knows that I love him.

At this moment he is smiling, playing video games with his oldest brother. The brace is off and being washed, he is free to feel nothing physically. It is his one hour reprieve from his 23 hour a day requirement. How we take things for granted, the smallest things become a source of joy. I am off to enjoy watching him do a task I have seen hundreds of times and never thought a thing about it, but at this moment I am smiling and just a little teary :’)

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Starting today, things will be different

Yesterday was an emotional day. Matthew was fitted with his SpineCor brace. The appointment took about two hours. Information from the radiology report was input into a system and straps were configured.
spinecor

My first thoughts were, this must feel comfortable due to the support that it is offering Matthew. He has had very significant pain in his back and the straps are ‘unwinding’ his scoliosis and encouraging his muscles to work in a different way. With more thought it occurred to me that he will experience additional soreness due to muscles working that have not been previously engaged. After an hour or so in the brace Matthew and the doctor confirmed this.

Before leaving the office, Matthew went in the bathroom to remove the straps and place them under his shirt. I was finishing up paperwork and scheduling follow up appointments when I noticed him sitting in a chair, blankly staring. I could tell that he was uncomfortable. It turns out that it is necessary to have something between the straps and his skin because of the tension they produce. He returned to the bathroom and placed the straps over his shirt again and we made plans to go straight home. Once home, the feeling of confinement was beginning to get overwhelming. I want it to be different for him, for him not to have to wear a brace, for him not to have scoliosis. I am grateful this soft brace is available. I can’t even imagine how much worse this would be with a ridged, hard brace. Never the less, it is still confining, suffocating, and I can’t fix it for him or take it away. It is a horrible feeling.

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Matthew, off in the corner of the living room a few hours after being home.

‘Because…..scoliosis, Mom’

So this has become Matthew’s favorite saying LOL! Every time he is asked to do something lately or why he hasn’t done something that he is suppose to, the response is, ‘because scoliosis, Mom’. I have to say that it cracked me up the first few times but I hit my limit last night. I let him know that he needed to wash the car tomorrow and he said that he couldn’t ‘because…….scoliosis’. I laughed but then realized that this is constantly on his mind since the diagnosis is so new. Matthew deals with pretty significant back pain. Before we knew the cause of the pain it was just a back ache, now the back ache is a reminder of the unknown. What is the brace going to feel like? Will people notice? Is the scoliosis going to progress? Will it continue hurting or will it hurt more? There are a lot of questions that I can’t answer for him. I am concerned that this is upsetting to him more than he is letting on. I know that I can’t save him from experiencing the emotions that come with this no more than anyone can save me from them. So while a sense of humor is helpful, at times dealing with things by making a joke can feel cold and dismissing to ones feelings. Because I am Mom, I can see in his eyes which approach to go with so far.

Matthew is getting his brace on Wednesday August 5th and we will begin chiropractic adjustments following that appointment, that should elevate some of his pain.

I would love some feedback in the comments section, how do you handle it when your child or loved one dealing with a health issue feels like they are somehow disabled? or do you say nothing and just hold them? (tears)

Behind curtain number two is…..Kyphosis and Lordosis

We received the lateral view x-rays yesterday and we are expanding our vocabulary once again. Kyphosis and Lordosis is a curvature of the spine sometimes referred to in layman’s terms as ‘sway back’ or ‘hunch back’. This simply adds another dimension to Matthew’s scoliosis but will not change the treatment, so that is good. sideviewxray lateralupper

Range of normal lateral curvature is 20-40 degrees and Matthew’s shows 54 degrees. Happy we are addressing all aspects of his scoliosis. Idiopathic Scoliosis – origin unknown, makes sense….Matthew has no history on either side of his family of scoliosis. Now ‘knee knocked’…my brother, myself and my niece, we have that, but nothing back related.

My husband and I were talking last night about Matthew. He brings up to me the Summer of 2006 when Matthew was in Kansas and I got a phone call that he broke is left leg jumping on a trampoline. It was a compression fracture. They cast it and he returned home to see a pediatric orthopedist that removed the existing cast, x-rayed it again and recast it. There was a concern that the fracture was seriously close or into the growth plate. Six weeks later the cast came off and we have not had any problems with his leg since….or have we? If Matthew’s growth plate was effected and one leg is slightly shorter than the other could this be a factor in him developing coliosis? Not that we can change what has happened but if we don’t correct root of the problem then the outcome will be compromised. So…if one leg is slightly shorter than the other and simple lift in one of his shoes should fix that VIOLA!!

Therapy, likely recommended

Update from previous post *How did I miss it?!?!?…*

I could find no evidence that Christian Slater has scoliosis

This is a text conversation between Matthew and I shortly after his diagnosis…

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Driving to Rite Aid for an ice cream yesterday my husband breaks the silence and says, with a strong southern accent ….’Mrs. Gump, his legs are as strong as I’ve seen, but his back is as crooked as a politician’ mouths open, we look at him in disbelief!! A second passes and we all started cracking up.

Fast forward 4 1/2 hours later…I just dropped my son off at a friends house to hang out. I cried the whole way home, sobbing really. I have been home for over an hour and when I think about this whole thing, tears fill my eyes. I don’t cry easy, I would rather get mad, that emotion I deal with better. Since we are all about one liners in our family ‘We’re having a bad day Doug’ from 50 First Dates comes to mind.

What is the cost of scoliosis treatment?

Why is it so difficult to ask the cost of scoliosis treat? Cost of care IS a factor and NO it does not mean that I don’t love my child enough if I choose a treatment that is affordable to our family. There are plenty of options available for non surgical treatment. I have learned that there are many great methods and within some of those same groups the cost of treatment can vary tremendously. Sometimes even to the point that it would be less expensive to travel out of state, pay for lodging, food and return flights for follow up than to have the SAME treatment done within my own state.

Okay, so let’s say that we can divide up non surgical scoliosis treatment into two categories. The traditional route is hard bracing and physical therapy 2-3 times a week and the second one makes more sense to me, activate and elongate muscles with various methods of exercise and stretching.

Nobody can tell you which treatment is best. You can pour over clinical studies to find a range of outcomes for any treatment mode. This is the same with ANYTHING!! because we are dealing with the human body and people. I read one blog where the writer used essential oils, massage and yoga to manage her scoliosis and my thought was awesome! so happy that is working for them! We are all created very different. I am leery of anyone who speaks poorly another’s choice of treatment. This goes for medical professionals as well. There is some pretty damning outcomes of traditional medical treatment of hard bracing and scoliosis surgery out there.

The nitty gritty….How much does it cost?????? We chose muscle therapy, this is done through chiropractic care, by a doctor with special training. There are different methods that can be used. Clear Method (only 9 doctor’s in the US certified to deal with cases like Matthew), SpineCor soft bracing and ScoliAcademy. Out of these three that I researched, the cost of treatment ranged from $26,000 for 6 months of treatment to $4500. This is a huge difference! As with anything medically related, outcome of the treatment can be influenced by the doctor performing the therapy or procedure. So many things to consider!!!

We chose SpineCor soft bracing with a doctor that has had very successful outcomes. Success being measured in two ways….keeping the scoliosis from needing surgery and stabilization or correction of the curve.

http://sandiegoscoliosiscenter.com/Dr. Tyson Perez

Seemingly endless research

The doctor that took the initial x-rays in Enid, Oklahoma spoke of surgery right off the bat. This was hugely concerning because we have a strong family history of degenerative disc disease. Surgery with pins and rods at such a young age would surely mean additional surgeries as an adult.

First step: Really, how bad is it? At this point we didn’t have enough information to know what kind of treatment would be most likely recommended. The radiologist in Oklahoma gave us a Cobb angle of 28 degrees. Matthew had an appointment with his general doctor on Thursday, July 23rd, the day after he came home. Additional x-rays were taken and we are appointed to see a Pediatric Orthopedic Specialist on August 14th, 2015. Knowing that we wanted to avoid surgery, I began Google searching non-surgical treatment for scoliosis and this is where my vocabulary began to grow. Cobb angle, Risser, Milwaukee, Charleston and Boston Brace, Clear Method, SpineCor, Schroth Method and Zhang’s Combination Method were added to my daily discussions with my family.

The internet and email are wonderful!! It allowed me to find doctors that offered non-surgical therapies and get their opinion of Matthew’s case sometimes in the same day that I emailed them. Phone consultations following the doctor seeing Matthew’s x-rays were fairly easy to have and typically free. The very first thing I learned is that this condition is not common for boys. If you are reading this chances are you are a female or parent of one. Second thing I learned is, depending on the doctor, your Cobb angle calculation may vary. Matthew has an ‘S’ curve, pretty obvious on the x-ray. We were told that his Cobb angle is 28 degrees. Well, with an ‘S’ curve, there should be 2 measurements, seems logical. I am still holding out for the Pediatric Orthopedic Specialist to weigh in on this. I feel that I am likely to get a more accurate assessment from him.

We have Kaiser Permanente and I have been extremely happy with our care. Their mode of treatment is the same as the majority of all healthcare. A Cobb angle under 25 degrees is a ‘wait and watch’ situation. Over 25 degrees is bracing and physical therapy. Over 40 degrees is surgery. If you have done your research the following will make sense to you. Matthew is at a Risser I which means that he is still growing. This is a good and bad thing. Good because with active treatment we can use his growth to help guide his spine to a more agreeable Cobb angle and possibly even correct it some. Bad because regardless of what is done his scoliosis may progress because it is over 25 degrees and well…..gravity. Some sort of bracing or therapy to strengthen his muscles makes sense to me at this point. After all, our muscles are what hold our skeletal system in place.

providencebrace progressivebrace plasticbrace spinecor2

This is an example of our choices of bracing.

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