Monday, April 20, 2015

Lets Learn About: Scoliosis

Interesting fact of the day.... 10-33% of individuals living with Neurofibromatosis have some kind of spinal deformity! Scoliosis is one of these spinal manifestations, and is one of the most common "deformities" seen in individuals with NF. Scoliosis is a lateral (toward the side or sideways) curve in the spine, which is normally supposed to be straight. Typically, scoliosis is diagnosed between the ages of 10 and 16, and is most commonly seen in females across the globe.

Types of scoliosis:

The most common type of scoliosis is called "idiopathic scoliosis", which means that there is no identifiable cause for the spine to curve (this is the kind of scoliosis seen in NF). There are many theories for potential causes, such as hormonal imbalances, but no research has found a conclusive answer as to what the culprit is! However, there are some other types of scoliosis that have identifiable causes, so lets take a look at them!

1. Congenital scoliosis -- is caused by a bone abnormality that is present at birth, which results from part of the spine not forming properly (this usually occurs within the first six weeks of fetal development). It's common for children with congenital scoliosis to also have kidney and bladder problems, which is due to the way the spine has formed

2. Neuromuscular scoliosis -- is a result of abnormal muscles or nerves, and is frequently seen in individuals with conditions such as spina bifida (when the spinal column fails to close properly) or cerebral palsy (a disorder of movement, muscle tone, and/or posture).

3. Degenerative scoliosis -- is a result from trauma (whether it was injury or illness), bone collapse, previous back surgery or osteoperosis

Signs and Symptoms include:

  • Uneven shoulders
  • One shoulder blade sticks out more than the other (called "winging") 
  • Uneven waist or one hip that is higher than the other 


There are multiple diagnostic tests that can be done to diagnose scoliosis. Many of the physical symptoms listed above are used as diagnostic criteria in the doctors office. Included in the physical exam, the physician will likely perform a neurological check to assess for thing like muscle weakness, numbness, and abnormal reflexes which all may or may not be present in someone with scoliosis. X-rays are the most common imaging test used, and is typically used to confirm diagnostic findings in the physical exam.


Treatment for scoliosis completely depends on the severity of the curve. Most children with scoliosis have very mild curves, and therefore won't need treatment to correct their scoliosis. Typically, children who have mild curves need to be seen by a physician every six months for a checkup to see if there have been any changes in the curvature of the spine. Guidelines for treatment also depend on things like severity of the curve, location of the curve and maturity of the patient.

Two of the most common treatments for scoliosis include:
1. Braces
2. Spinal fusion surgery

Braces are typically used if a child has moderate scoliosis and is still growing. Wearing a brace will not cure scoliosis or reverse the curve, but it will prevent from the curve from becoming worse. The most common type of brace used is an "underarm" or "low-profile brace". This brace is almost invisible under clothing, and it sits under the arms and extends around the rib cage, lower back and hips.

Spinal surgery is not usually done unless a child's scoliosis is greater than 40 degrees. In spinal surgery, two or more bones in the spine are fused together, so they cannot move independently. Metal rods, hooks, screws, or wires typically hold the fused part of the spine straight to help the new bones fuse together. Surgery is usually preferred when the the child has stopped growing, but special rods that can be lengthened can be inserted in children who are still growing.

There you have it folks, I hope you all learned something new!


References used: 

Saturday, April 18, 2015

Flashback to April 18, 2011

Well, it has been 4 years since I finally decided to tell my story, and what a wonderful 4 years it has been! I have been overwhelmed by all of your support, words of encouragement and love. If I would have know this is how my story would have been received, then I probably would have shared it YEARS ago!

But in remembrance of this very special day for me, I decided to post the very first "note" I posted on Facebook about my condition. It's kind of crazy to see how far I've come! So here it is people!

Coming Clean...

So this weekend I had the fantastic opportunity to meet some very inspirational people at a Neurofibromatosis seminar. These people really made me stop and think that I shouldn't be afraid to be who I really am.

              When I was 3 years old, I was diagnosed with a genetic disorder called Neurofibromatosis Type 1, or NF-1 for short. For those of you who don’t know what it is, it’s a genetic disorder that affects chromosome 17. This chromosome is in charge of preventing the growth of tumors in your body. So, in easy terms, tumors can grow uncontrollably anywhere in my body. If you wan to know more about this disorder, go to

            So, more about me….. NF didn’t really start affecting my life until I was about 13 years old. In the summer before grade 8, I had a large birthmark removed off my back. It was screened for cancer, and thank God the results came back negative. My pediatrician decided that I should have an MRI of my brain, because people who have NF can develop tumors on their brains, spinal cords, hearts etc. I was terrified. After about 2 weeks, my test results came back. They had found a small growth located near the hypothalamus (which is right in the middle of your brain). This growth was monitored (and still is monitored) and lucky for me, it isn’t cancerous, and I don’t need any surgery to remove it.

            After that, I started experiencing awful back pain. It persisted for about four months until we decided to get it checked out. I had spinal scans, and they determined that I had an abnormal curve in my spine (which is called scoliosis).

            After all of that, I didn’t think that things could get any worse, that I could possibly have anything else wrong with me. Boy was I ever wrong! I started getting awful headaches, and they would start in the morning, and last all day long. At first, Advil would work to take away the pain, but after a while I was unable to get any type of relief. In the past two and a half years, I’ve seen two neurologists and two neurosurgeons about my chronic headaches. The growth in my brain is not causing the headaches, and I’ve tried countless medications. Nothing has worked for me. I had a spinal tap last year to see if there was pressure in my brain, the results came back normal. I even tried IV medications this summer, which didn’t work either.

            Also, last summer I was diagnosed with a disorder called growth hormone deficiency. For those of you who know me well, that’s the reason I’m so short. For that, I’m required to inject myself 6 days a week with the human growth hormone.(Now I am off the injections as it caused some growths to appear in my arms and legs).

            On top of that all, they also found two tumors in my pelvis this summer during a routine MRI. The doctors are still unsure about what they are, so they have held off treatment at this point.

            My point of this note is NOT to get sympathy. All I want is to spread the word about NF. I’m betting about 90% of you don’t know what it is. You can think of me as a “freak” if you want, but I don’t care anymore. Nobody has figured out this about me, and up until now I’ve been treated normally. I’m not contagious, I’m not defective. I’m a human being like everyone else who is only looking for acceptance. As one brave young girl said this weekend at the seminar, " If you don't like the way I look, don't look at me."

          I have been given the opportunity of a life time to go to the Mayo Clinic is Rochester Minnesota this summer to be looked at by some of the best doctors in the world. Hopefully they can offer me some advice on how to deal with some of the conditions I have.

So, if anyone has question, don’t hesitate to ask. Message me if you want, or post them on my wall.  

Again, thank you guys for your continued support, which has helped me grow and mature into the person that I am today!

- Court

Monday, April 6, 2015

Allison's Story

Hi everyone! So I thought that it might be interesting for me to start sharing other people's stories and journey's through NF, so please take the time to read this wonderful post from Allison, who has been living with NF for 16 years! Please show your support towards Allison and leave comments and share the heck out of this post! Thanks guys =)

You are braver than you believe smarter than you think as stronger than you seem.. Courage is a powerful thing , it pushes us through the worst of times and lifts us up in the best. At times it may be hard to see the light at the end of the tunnel but through believing and having courage can make all the difference and in my case the power of courage is what got me through.
Courage gives us the power to push through struggles in our life so we can come out on top. At the age of 1 I was diagnosed with a genetic disorder Neurofibromatosis that can cause tumors to grow on or in the body on nerves.In my case there was a spontaneous mutation , making me the only one in my family with it. NF can cause cancer ,deafness and even blindness and much more. There is no cure for NF but in time there will be. For now it's constant MRI's doctor visits and the constant unknown of what if? 
At the age of 15 on July 1st 2013 I had brain surgery to remove a tumor on my cerebellum due to NF.. I was constantly falling and tripping on practically air..I recovered from surgery remarkably well. Courage and the power of prayer held me up through all of it.. I do go for MRIs every 6 months, and no matter how many I go through I always dread going. I do really believe positivity is key remaining positive through everything really helps. 
Even though I have a disorder full of unknowns I wouldn't change it for the world, I met extraordinary people who have helped change my life and I've helped others through there journey. I wouldn't have been able to do anything with out courage. Courage pushed me to above as beyond.