Thursday, January 27, 2011

Scoliosis Treatment

This is the brace Amber was fitted with last night. It is a SpineCor flexible brace and I think it rocks over the plastic/fiber glass ones the pediatric orthopedics use. She will wear a under armor type shirt under the brace and then her clothes go over the brace.
We went to this appointment believing that Amber had a curve of 30 degrees to 40 degrees. Unfortunately when the specialist actually measured the curve we got the shock of our lives. She has a 70 degree curvature of the spine. When you get around 50 degrees they recommend seeing a surgeon. That's really not an option for me with my 11 year old girl. Since Amber has not started her period yet that's really bad and her prognosis is for the spine to keep curving. As she grows so does the curve and not having her period is a really bad thing for us right now. We are actually praying for her period to start ha ha. I told her I'm gonna pump her full of hormones which realistically means having her drink lots of milk and eat more meat. They pump those cows full of hormones which starts little girls on their periods quicker. Oh my. Anyhoo, I cried my eyes out again. It was such a shock and after I cried for a bit I just went into survival mode. Mike really liked the doctor which made me really happy. Mike has this unique gift of being able to sense things about people. He is never wrong about anybody he meets. He just knows when someone is shady and he got good vibes about this guy.
So the prognosis isn't good for Amber. He gave us some options.
1. We could brace her with the SpineCor brace and see him for therapy and let him work on her spine with the brace and a very strong home physical therapy program. Her curve is such that he wants to do a 2 week physical therapy with her starting Valentines Day. We would pull her out of school for that time also. She would go to physical therapy from 9:30-12:30 and again from 3:30-5:30 Monday thru Thursday. Friday she will be too exhausted and they only do the morning therapy. Since the office is an hour away we will just hang out somewhere for the 3 hours in between sessions. We will have to purchase a traction chair and after the intense 2 week therapy she will do the traction chair for an hour a day. Picture an electric chair and that's what the traction chair looks like. After traction at home we will have to do physical therapy together and also I have to work her out on our home exercise equipment in addition to the physical therapy because she needs to be pulled out of P.E. (they can't have her sweating in the brace as it retains the moisture and is not hygienic and the moisture makes the brace less effective.) and also she needs to lose weight. The bands are cutting hard across her stomach and she is uncomfortable. Lovely. So basically she will be tied up in home physical therapy 2 hours a day. Also 20 minutes before bedtime he wants me to use some wedges that he will give me to put her into positions and use the wedges to keep her that way for that 20 minutes and then she can go to sleep. Good thing she has a TV with a DVD player in her room. She can only take the brace off 2 hours in the morning and 2 hours at night. Monday through Friday she has school so she will miss that 2 hours in the am. He said with this therapy we can realistically expect her curve to decrease from 70 degrees to about 50 degrees which is still a bad curvature. Now I also know that people defy odds all the time and this is a general expectation based on past cases. She may do better or she may do worse. Every body responds differently. But, we also have Jesus and I have faith in Him. If He wants to heal Amber and we have faith she will be at a zero curvature if He so chooses. I won't put limits on Jesus but I also must process realities and say that Jesus can but make the best choices here in the natural while we pray for a miracle. Here is the website for the SpineCor brace if you know anybody with Scoliosis as I really like this brace.
2. Option 2. See a surgeon and he recommended that we do so. We can have the surgery which the Shriners will do for her for FREE because we have no health insurance. I love those Shriners. Surgery on an 11 year girl is not good and he said they'd probably brace her in their fiberglass/plastic braces until she grows more so either way she is going to be braced until surgery if we choose the surgery option. I really hate the surgery option. What parent would love the surgery option? None of course and it may end up being necessary. He said we need to make the decision for ourselves. Before he braced her he said it was a 70/30 odds for her that she would end up needing the surgery by his best guess.
We opted for therapy and the SpineCor brace first before surgery. I am not even going to make an appt. with a surgeon until we give this therapy a go. I feel like I need to try this first and Mike agreed. Before he braced her he said that he did not expect to see an improvement in her spine curvature when he the took the X ray of her in the brace. He said at 70 degrees it should not be expected to see improvement and if there was it would be maybe 5 degrees or less upon just putting her in the brace. If she had a curvature of 30 degrees or so she could be put into the brace and when the brace was on she would be at zero degrees or less than 10 degrees. He said at this point the brace would be stopping progression and then the therapy he would do with her for the two weeks and then the home therapy would be helping to start improvement in the curve. So, this next part was the only ray of hope in the whole 3 hour appointment. After he braced her and took an X ray with the brace on her curve went from 70 degrees to 60 degrees. He was very optimistic and surprised that he got a 10 degree improvement from her considering how bad the curve was. He said that means her spine is still very flexible, something critical to correcting this disease, and that now instead of a 70/30 odds of ending up in surgery we are now probably 50/50. Hey, this mama will take those odds. Thank you Jesus already for that miracle. This doctor actually designed and invented the shorts part of the brace pictured above and SpineCor uses them now. He was really honest with us and I like that. I'll take honesty any day. So, I feel full of hope for kitty. I just can't take an 11 year old girl to see a surgeon, not without trying this first. Before the month is over we will have borrowed $14,000 to treat Amber. As a side note, I had a great laugh when my Grammy who is in no way hurting for cash and is always traveling and going on cruises from which she just returned from one, informed me that she won $500 on the cruise she just came back from and since we would have to purchase lots of new clothes for Amber to fit over her brace she would be sending me $10 in the mail. I laughed and laughed and laughed. We were skyping her from my parents home and Grammy kept yelling "What's so funny?". Oh my, $10 Grammy, really? What the hell am I going to buy for $10? My mom got pissed and told her she would send her the bill for the $14,000. I thought it was hysterical. Fricken $10, keep it you old bird I wanted to say. But I was just in a bad mood at that point and I'll be happy for that $10 to use it for an under armor shirt for her. The school nurse just called. Amber's brace is rubbing her neck, the cami I put her in isn't working. We will be purchasing under armor at Dick's this afternoon. Yep. My poor little kitty poo.
Some friends are asking us about doing a benefit concert to help pay for kitty's treatments, the brace and the traction chair. We were against it when we were just looking at the initial $4300 for the brace but now that we are up to $14,000 for Feb alone, I'm thinking that concert option sounds good. I want Mike to put together a couple of baseball tournaments to raise money too. Since he is President of the local rec league he helps people do that all the time and rents out the field. Well, maybe it's our turn to put on our own tournament and raise some money for kitty. Baseball is huge around here and teams will always pay to be in tournaments if they are good ones. So that is another option. My mother in law called the United Way and that was a huge joke. Did you know that the United Way doesn't actually help anyone? The lady told me that they give all the money they receive minus their administrative costs which is probably around 35% to charities. The only thing they do for people when they call for help is advocate for them. In other words they will tell me who they work with and if any of those charities they give money too can help me then they will contact that charity and see if that charity can help me. What a joke? Why even give money to the United Way if they don't actually help anyone and they keep $3.50 of every $10 you give. So the charity receives $6.50 from your $10 donation and they have administrative costs of around 25 to 30% so by the time the United Way who doesn't help anybody takes their cut and everybody has paid their expenses your $10 donation is really $4. Yeah, just give straight to the charity you like. More people would get helped that way. They also told me they don't help anyone or work with any charities that help people with medical costs. Whatever. Also, I cannot be helped if I am current on my bills. She told me not to pay my rent or utilities and I might get some cash for being behind on my bills. And, that would be what's wrong with so much of America. If you aren't responsible you can get help. If you are responsible and do your best to do what you have to nobody will help you. If I was illegal this would be free I suppose? Or if kitty commited a crime and was in juvenile detention she'd get free care too. Weird. No thanks lady.
Amber and I talked about prayer last night on the way home and I told her to call on Jesus to be with her. She said she had been. It was a nice chat. I told her that her faith was important and to be honest with the Lord and Jesus. She said she would ask them to help and heal her. That's my girl. I'm just asking everyone to pray for a full recovery. She has already beaten the odds by getting a 10 degree correction when the doctor didn't' expect hardly anything.
It's hard to know what the right thing to do is. Well, all I can do is go with my instincts and research as much as I can. This stinks. It could always be worse but I'm sick of saying that. Trying to stay positive today and not cry or fret. Talking to Jesus and the Lord a lot and being honest with them. What else can I do? Thank you for your prayers.

Update: 8/31/16 The brace did not work. At all. In fact, she got worse while wearing it. Total waste of money!!!! After wearing the brace just a month or two, we were told she had to see a surgeon and have the surgery. Her curve worsened wearing the brace, it was better for appearances than the hard plastic one she spend a couple of weeks wearing in between surgeries at Shriner's but at least the plastic one did not allow her curve to get worse like the other one. Shriner's was amazing!!! We went to the one in Philly and although she still retains a very large curve due to her spinal cord having become flat in her mid spine and her cord would not tolerate the curve correction of 35 degrees they were able to achieve from being over 100 degrees at the start of surgery; she stands looking perfectly straight and not one single person can tell by looking at her that she has any issues with her back at all. They did some things with her ribs and were able to manipulate her body so that although she has a 70 degree curve, it is not at all noticeable. Her shoulders are straight, everything is aligned beautifully. Only when she bends straight over is it noticeable at all. Yay for that!! My recommendation....get the surgery. You can't stop scoliosis. It was not at all what I expected, she dealt beautifully with it and when it was was over. No more pain. She could just live again, and that makes me so happy for her.

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