Remember, this is your life. Do what you love, and do it often….

Posted by admin in Coping with Scoliosis

I find dealing with Scoliosis you often forget the simple things in life. Life is a gift, every day we wake up and get the chance to say, “Today will be different”.
I found these words on tumblr (carriesmiles). I know that a lot of you are dealing with pain from your Scoliosis or trying to figure out how to help your child cope with their Scoliosis but it will get better! I thought in the mean time this was a great reminder to read every day to see and feel how lucky we truly are.

My favorite line are in BOLD!

Screen Shot 2012 01 21 at 3.49.29 AM Remember, this is your life. Do what you love, and do it often....

My Nephews and Niece "Hear No Evil, See No Evil & Speak No Evil"

This is your life. Do what you love, and do it often.
If you don’t like something, change it.
If you don’t like your job, quit.
If you don’t have enough time, stop watching TV.
If you are looking for the love of your life, stop.
They will be waiting for you when you start doing things you love.
Stop analyzing. All emotions are beautiful.
When you eat, appreciate every last bite. Life is simple.
Open your mind, arms, and heart to new things and people. We are united in our differences.
Ask the next person you see what their passion is and share your inspiring dream with them.
Travel often; getting lost will help you find yourself.
Some opportunities only come once, seize them.
Life is about the people you meet, and the things you create with them, so go out and start creating.
Life is short. Life your dream and share your passion.

Print this out, Read it often, Look at when your sad, Repost it!

Screen shot 2011 11 03 at 1.09.07 AM1 Remember, this is your life. Do what you love, and do it often....

The Doctors TV: Scoliosis Recap Alternative Treatments

Posted by admin in Coping with Scoliosis, Scoliosis, Scoliosis Events

The doctors featured a show on Scoliosis showing Chiropractor treating a young girl with Scoliosis. I was little shocked at first to feature this treatment style for Scoliosis. But I have always respected The Doctors and the producers of the show but to me this was a bad call. I believe though since they featured surgery they wanted to show another side to treating Scoliosis. I wish they would have mentioned this during the show since the segments was a little misleading.


“Eight-year-old Kailyn was diagnosed with scoliosis about two years ago. Jennifer shows how Kailyn’s spine differs from a normal one.”

“Dr. Jim demonstrates how he tests for scoliosis while Jennifer adjusts Kailyn’s back and explains other treatment options.”

Many insurances do not cover Chiropractor care or the plans have limitations or exclusions applicable to chiropractic care. Please check benefit plan descriptions for details before you spend good money on unproven treatments.

Even the Chiro Community, a refer network for Chiropractors notes that treatment by them is unproven for Scoliosis. Braces can be used to prevent the curve from increasing and that surgery is need if bracing fails in extreme cases.

Read the Article on Chiro Community Click Here

Chiropractic manipulation has no proven value for treatment of idiopathic scoliosis. A Chiropractor should only be used for Scoliosis if patient and doctor (certified by The American Board of Orthopaedic Surgery) agree that chiropractic care is an option, the chiropractor will begin to treat the patient to help restore the misaligned vertebrae back to normal position, allowing the body to heal itself naturally and maintain normal functioning.

Other studies by the Mayo Clinic also indicate that the following treatments for Scoliosis are also ineffective:
Electrical stimulation of muscles (aka TENS)
The use of electric current produced by a device to stimulate the nerves for therapeutic purposes. TENS by definition covers the complete range of transcutaneously applied currents used for nerve excitation although the term is often used with a more restrictive intent, namely to describe the kind of pulses produced by portable stimulators used to treat pain

Biofeedback


The process of becoming aware of various physiological functions using instruments that provide information on the activity of those same systems, with a goal of being able to manipulate them at will. Processes that can be controlled include brain waves, muscle tone, skin conductance, rate and pain level.

Surgeons are trained to be evidence-based. While they can mention there are unproven alternative therapies, often do not tell patients about specific ones because of the chance the parents will think the treatments are legitimate. They aren’t hiding these treatments from patients and parents, there are too many alternative therapies for a surgeon to name in one clinic meeting. None of these treatments have any evidence of efficacy which is why surgeons are not pursuing them.If the surgeon doesn’t mention a treatment then that is a clue to the rational that the paient is probably wasting their time pursuing it. The surgeons are the only relevant medical training to treat Scoliosis.

In summary, approach alternative treatments with caution and know what your insurance is going pay for and what you’ll be on the hook for. Always consult an Orthopaedic Doctor.

Screen shot 2011 11 03 at 1.09.07 AM1 The Doctors TV: Scoliosis Recap Alternative Treatments

 

 

 

 

 

 

Click Here to  Read Part 1 of Part 2:”The Doctors: TV Show” on Scoliosis

To visit “The Doctors” Website Click Here
To view “The Doctors” Show Synopsis  Click Here

The Doctors TV: Scoliosis Recap

Posted by admin in Coping with Scoliosis, Scoliosis

The doctors featured a show on Scoliosis showing Paige’s Scoliosis Story.
She states that she was diagnosed at age 12 was told she did not need to have the surgery, but over the years she had increased pain and shrunk height (lost 2 inches over 6 years).

*Warning: This Video is Graphic and Shows Actual Surgery*

Complex spinal surgeon Dr. Michael S. Chang performs a direct vertebral derotation, this is Paiges Scoliosis Story.

My thoughts on watching this was as followed:
What treatments did she under go to prevent her curve from increasing?
Did she wear a brace? 
Was it suggested and she just didn’t?
Why did her Scoliosis get that bad, before she had surgery?

For the record I’m not calling out Paige and wish a speedy recovery, it’s a painful surgery and I wish her only positive thoughts and well wishes! I just tend to wonder these things being an activist for Scoliosis and have vast knowledge on was a “typical treatment plan” is for anyone with Scoliosis. What stuck out is that the background, was sort vague… maybe for time? But since she doesn’t mention a brace, makes me think she did not wear one.

If Paige didn’t wear a brace I wish she would have used that platform to encourage others to wear there brace so they are spared the surgery. The goal of bracing is to try and keep your curve from progressing. If the curve in your spine is more than 25 degrees and you still have a lot of growing to do, your scoliosis curvature could rapidly get worse. Which maybe why she lost height from age 16 to 22.


Complex spinal surgeon Dr. Michael S. Chang explains direct vertebral derotation, a six-hour procedure, to treat scoliosis

 Also would like to mention that they showed the new style of surgery. This is very different from the surgery that most people had (who are 20 years +) my first surgery in 2000 was done the “old way” with Harrington Rods. My last surgery is 2009 they used the “new method” along with some other surgical treatment since my case is so complex.

Would love to know if she goes Sky diving though!

Screen shot 2011 11 03 at 1.09.07 AM1 The Doctors TV: Scoliosis Recap
 

 

 

 

 

 

Click Here to Read Part 2 “The Doctors: TV Show” on Scoliosis

To visit “The Doctors” Website Click Here
To view “The Doctors” Show Synopsis  Click Here

Just so you know…

Posted by admin in Growing Up Twisted

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Looking back on my story with Scoliosis there is so much I wish I would known at the time. It would have made things a little easier if I would have seen the light at the end of tunnel. At the time no one really talked about having Scoliosis and being in Middle School, I truly felt like an outcast. I didn’t really get the full impact of what was going on with my spine, nor did I really care. I really wished I had been more hopeful and positive. Sitting in the doctor office that day I felt like my life was over. If I only I knew it was only the beginning of an awesome, amazing, twisty journey that led me to be the person I am today.

This is a letter to a twelve year old me:

Dear Alana,

This new journey with Scoliosis isn’t going to bad as it seems now. I know it’s not how you pictured your life when you were a little girl, dreams of normal adolescence seem so far out reach. I know you’re going to lay awake worrying, wondering what is going to happen to you – but don’t.  It will be okay.  As off the wall as that seems now, everything will work itself out just perfect and just how it’s suppose to be. 

You can’t even imagine everything you’re going to through on top of being diagnosed with Scoliosis. Things are going to stressful, your going to feel hopeless and defeated but don’t loose faith! Scoliosis is just going to be just another bump in the road. Your life is going to be eventful, fun, fabulous and incredible. Your family is so supportive of you and your Scoliosis.  You’re going to have such a strong support system that will be there every step of the way through the endless parade of medical tests, MRIs, surgeries, and x-rays. They will be there through everything and forever more will always be there for you, no matter what you’re going through.

The next couple of years are going to be tough. Some days are going to be terrible, you’re going to want to hide, and not deal with it, but be strong. Wearing a brace isn’t a fashion statement at twelve but you’re wearing it because you need it. Ignore those who are negative. People your age aren’t going to understand how deep and serious everything is going to be that you’re going through. They don’t see the pain they’re inflicting when they point out your brace or surgical scars. It doesn’t make it any better but just know that this has nothing to do with you. Something inside themselves is broken that they feel the need to tear you down. Girls at this age can be mean, anyone who has any slight difference is a target to them. Best way to deal with this is self acceptance.  The sooner you can come to terms with your disorder the sooner there words are going to no longer hurt.

You’re not going to be lucky enough to just wear a brace, you’re going to have surgery. A lot of surgery, and not just on your back. You’re going to be upset, you’re going to fight it, but there is nothing you can do, yet again this is something that you need. This surgery will save your life to give a fighting chance to have the “normal” life you crave.

You’re really going to have some of the best surgeons around. They truly have your best interest in mind and will take such amazing care of you.  Your even going to have your Scoliosis studied and presented to many doctors and big conferences. Think of all the people you can help, by being open and honest about what your going through.

Surgery is going to be painful and the recovery is going to be worse. No one said this was going to be easy, but trust me in the long run it will totally be worth it. Don’t be negative; God only knows how easy it will be. But self hate will get you no where. You don’t have the worst case of Scoliosis. There was always be someone with a worse curve then you… just get over it now. Just take some time and be thankful they can fix it. It may not seem that way at the time but compared to what other disorders you could have, Scoliosis is nothing. Just think though… on the bright side you really like hospital food

After surgery your spine is going to look so good. You’ll have a few scars but in end who cares. Some will be emotional others will simply be physical. Like your surgical scars the emotional ones will heal, but you will never forget. After all these struggles you might be a little discouraged but your life is going to be amazing – don’t you forget it. You are so strong to be going through everything you have endured. This battle with shape the women have today and everything even the bad things are going to be worth it. In the end you prove that your more then the girl with the curved spine. I just really want you to know that you’re going to make it.  See you in the mirror!

Love Always,
Screen shot 2011 11 03 at 1.09.07 AM1 Just so you know...

Why Scoliosis?

Posted by admin in Scoliosis

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Scoliosis is a personal passion of mine. Some have asked what drew me to this cause and I respond by saying “I didn’t choose

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My PIC in 2007 after another Scoliosis Revision Surgery

Scoliosis, Scoliosis chose me” and I really wouldn’t want it any other way. I have been dealing with my Scoliosis for many years now, since roughly 1999. Now 11 years

later I have been through three spine braces, seven spine surgeries, a hip surgery and multiple physical therapies all while going through school and trying to be a normal  girl.

When I first found out I had Scoliosis I was crushed, to me my life was over. I didn’t really know anything about this weird thing called “Scoliosis” and didn’t really try to find out. I thought if I’d avoid learning about it somehow it would magically go away… No such luck, after a few x-rays and seeing a Pediatric Orthopedics specialist I was informed my case of scoliosis was consider severe. I was braced for about a year and half, then had my first of many surgeries to correct my curve. I felt so alone, although I had a very supportive family, it just didn’t seem fair. Kids my age couldn’t relate to what I was going through on the inside and outside. Plus lets face it in middle school it doesn’t take much for you to be consider a freak.

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Wearing my TSLO Brace. Having Fun with my little sister. Guess your never told old for dress up?

It took me a lot of years to want to open up and talk about my personal pain, my surgery and my life with Scoliosis. I want to spread awareness in hope of others to understand and so they know that they are not alone. Scoliosis is not a death sentence. You can lead a very active and healthy life with Scoliosis.

Even though scoliosis is such big part of me I don’t let it be the only thing defines me. I’m more then just a girl with a curved spine. I have an activist mind set. At the age of seven I declared I was joining the Peace Corps. I whole heartily believe in going Green and saving the Whales. I also love Okapis, which sadly are endangered, I think we should try to save them too. They live in the Congo which is at war right now so they are used to as “Bush Meat” to feed soldiers battling in the Jungles of Africa. I have a huge love of art. I could draw all day long and it couldn’t make me happier. I have so much drive, I know I can do anything I set my mind to. No one and no disorder will stand in my way.

I am so proud of my Scoliosis now. Having this disorder has shaped my outlook. I see things from a totally different angle then most. I feel like it has given me such a heart to serve and reach out to others effected by Scoliosis.  I have really truly embraced my personal battle with Scoliosis with open arms. Of course not everyday is easy, but every scar, every memory (even the bad ones) has effected who I am today. I will never forget who I am and what I have been though.  I’m Alana, I have Scoliosis, and I’m fabulous.

Screen shot 2011 11 03 at 1.09.07 AM1 Why Scoliosis?

25 Random Things About Alana

Posted by admin in Life of Alana

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Hey Everyone! I get a lot of questions about me and my Scoliosis. I wanted to share some random facts about me and my life besides having a curved spine. Enjoy!

1.I love Marie Antoinette; I think she is one of the most misunderstood historical figures of all time.
2.I’m addicted to reading self help books, even if I don’t agree with the angle they’re trying to spin I still like hearing other people’s insight on life.
3.I have seen every episode of Law & Order, Law & Order: SVU, Law & Order: CI and the short lived Law & Order: Trial By Jury.
4.I would be a vegetarian but I love bacon way too much ?
5.I never went to Prom in High School, it just wasn’t my thing.
6.I hate flowers, they always remind me when I’m in the hospital but I do love Sunflowers and Gerber Daisies, who could hate those? ?
7. When I was six I really wanted a horse but we couldn’t buy one because I live in a planed community. So, I measured out my closet to see if I could fit a Shetland pony in it. And for the record it would have :]
8.I think Audrey Hepburn is the most beautiful creature that has ever lived. She also stars in one of my top three favorite movies, Breakfast at Tiffany’s.
9.My other two favorite movies are Gone With the Wind & Donnie Darko.
10.Tiffany’s Blue (Robin’s Egg) & Lime Green are my favorite colors.
11.I’m a bookworm I love to read but if I could read only one book for the rest of my life it would be the Great Gatsby.
12.I’m obsessed with my cat, Shasta. She is a giant spoiled brat but I love her probably more then is healthy.
13.I love to laugh, giggle and be tickled. I’m very ticklish. I truly think it’s a great ice breaker, stress releaser and the best medicine.
14.I can’t spell to save my life, and I hate math with a passion.
15.I have opinions; I have a lot of ideas and views. I will never be that girl that people think is mindless, weak, and have no thoughts of my own.
16.I love art it can be such a personal expression therefore I have no issues with tattoos or piercing, the more the better, if that’s your sort of thing.
17.I think Dr. Laura is so wise, sometimes people need tough love.
18.I have two bone disorders: Scoliosis and Femoral Acetabular impingement syndrome. I’ve had major surgeries for both.
19.I hate dryer lint, I refuse to clean out the lint trap in the dryer or touch anyone who touched lint until they wash there hands.
20.When I was growing up in Washington my grandparents lived one house away from us, it was amazing, I miss seeing my Grandpa everyday.
21.I’ve dyed my hair pretty much every natural shade under the sun.
22.I worked in Bakery in High School, I pretty make bake the best cookie ever :] I love to cook, I think it’s relaxing.
23.I fully believe Lifetime, Ice Cream, and Hot Tubs can heal all wounds.
24.I love going to thrift stores, yard sales, and estates sales. You can find the best deals and the most amazing vintage things.
25.I always wanted to date a guy who drove Mustang when I was growing-up, and now I am.

Key to Zen

Posted by admin in Coping with Scoliosis

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Having Scoliosis can be stressful. There is many different ways of coping with this stress. Using the teachings from the Dalai Lama helps me remember what’s really is important. It’s hard no to get wrapped up into feeling negative and sorry for myself. This helps but my mind in a move positive place. For those of you who don’t know the Dalai Lama is a wonderful spiritual teacher. No matter what your spiritual beliefs are his insights on to life and how to handle things are remarkable. I got this from an another online website. Below is his instructions on living a life filled with loving Zen in the New Year.
1. Take into account that great love and great achievements involve great risk.
2. When you lose, don’t lose the lesson.
3. Follow the three R’s: Respect for self, respect for others and responsibility for all your actions.
4. Remember that not getting what you want is sometimes a wonderful stroke of luck.
5. Learn the rules so you know how to break them properly.
6. Don’t let a little dispute injure a great friendship.
7. When you realize you’ve made a mistake, take immediate steps to correct it.
8. Spend some time alone every day.
9. Open your arms to change, but don’t let go of your values.
10. Remember that silence is sometimes the best answer.
11. Live a good, honorable life. Then when you get older and think back, you’ll be able to enjoy it a second time.
12. A loving atmosphere in your home is the foundation for your life.
13. In disagreements with loved ones, deal only with the current situation. Don’t bring up the past.
14. Share your knowledge. It’s a way to achieve immortality.
15. Be gentle with the earth.
16. Once a year, go some place you’ve never been before.
17. Remember that the best relationship is one in which your love for each other exceeds your need for each other.
18. Judge your success by what you had to give up in order to get it.

untitled Key to Zen

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