Friday, October 31, 2014

Cardiac Issues Related to NF

Neurofibromatosis doesn't favour any part of the body. It doesn't favour any body systems, it doesn't favour any organs. It attacks the brain, spinal cord, integumentary system, lungs, bones, eyes... you name it, and NF will likely wreak havoc there. Ask anyone who has NF, and they will likely tell you that their condition affects more than one bodily system. Cardiac issues however, appear to be under reported in individuals diagnosed with Neurofibromatosis.

Recently I have  been dealing with chronic sinus tachycardia (a heartbeat that is too fast), hypertension, and a Grade 1-2 heart murmur. When these problems were first detected, doctors were actually very worried about these newly developed symptoms. The part of my brain where my tumor is located, controls and regulates the body's blood pressure. Seen as how my blood pressure spontaneously went up in a matter of a few weeks, they were very concerned that the tumor was growing. My blood pressure typically sat around 105/75, so when it shot up to 140/82 and my pulse was sky high at 112, there was definitely a reason to be concerned. 

My MRI got bumped up several months (I only had to wait 2.5 instead of 6), I went for an ECG as well as an echocardiogram to see if they could find any physiological reasons for the change in my cardiac status. Nothing showed up on those tests that were too serious, but something did show up on the MRI. I was shocked when I heard the news. My brain tumor was.... SHRINKING! Over the years it has been decreasing in size, but the amount of relief I felt when I found out the tumor had not grown was immense! SUCH A RELIEF! 

I just completed a 24 hour period of wearing a holter monitor about a month ago, which consisted of 5 cardiac leads that were placed on my chest to monitor my heart rate. The results came back normal, which means my diagnosis is chronic idiopathic sinus tachycardia. Sounds complicated eh? It just means that my heart beats too fast and they don't know why. Luckily, as of right now they don't need to do anything about it. If I start having more complications such as chest pain and shortness of breath then I may need to be put on medication and I will need to be monitored closely.

Here are some facts for you about cardiac issues related to NF :)   

  • Neurofibromas can grow inside of the heart and the cardiac chambers, which obstructs blood flow in the heart as well as in the major vessels 
  • Higher rates of mycardial infarctions (heart attack) and cerebrovascular accidents (stroke) occur in individuals with NF 
  • Hypertension is frequently associated with NF (15%)
  • Cardiac complications can lead to a life expectancy of 17 years less than that of someone without NF (in severe cases)
  • NF 1 can cause cardiac vasculopathy (inflammation and destruction of blood vessels)
  •  Pulmonic stenosis is when one of the valves in the heart (the pulmonary valve) is narrowed. This causes blood to flow to the lungs instead of the heart. This complication is usually present at birth. 
In children, cardiac complications associated with NF are most often diagnosed when the child experiences spontaneous headaches, seizures, weakness and involuntary movements of the body . Adults tend to present with similar complications, but  hemorrhaging in the brain may also be the culprit. 

So I hope you all learned something new today! I know I did when I read all of this! Thank you for reading!


By the way, please comment on my posts and let me know what you would like to learn about NF or any stories you would like to hear from me! I'm open to sharing most of my experiences. 

Journal Article Reference: 

Friedman, J. M., Arbiser, J., Epstein, J. A., Gutmann, D. H., Huot, S. J., Lin, A. E., Mcmanus, B., Korf, B. R. (2002). Cardiovascular disease in neurofibromatosis 1: Report of the NF1 cardiovascular task force. Genetics in Medicine. Retrieved from

Friday, October 24, 2014

A Post From Reggie Bibbs

Hey everyone! I really wanted to try something different this week, so I asked my dear friend Reggie Bibbs to write something about his journey in the NF world. Now, I told him that he could write about any experience that he has had throughout his lifetime, and I was honored and humbled when he sent me this article about meeting me and my Mom. I'm sure most of you have read my previous post about my experience meeting Reggie Bibbs (and if you haven't please do), so this came as a huge surprise to me. It truly is amazing how one interaction with one person can change someone's life forever. So please take the time to read this and comment either below or on Facebook, because Reggie took a lot of time out of his day to do this for me. Enjoy!

I was excited about my second opportunity for a return trip to Canada. I was excited, but still nervous.  Plans were being made, and I was trying to keep it under wraps until it is almost time to go.  Courtney and I had just learned of each other. Courtney ordered a few Just Ask shirts. It was slow arriving. But we kept in contact. They final arrived. Courtney learned that I would be there. She would post how happy she was, that we would meet at the NF Symposium. I was just as happy. I had not seen a photo of Courtney, I wouldn't know who she was until she introduced her self to me.

We arrived in Canada, and got settled in. It was time to go out and get a meal. Just as we were leaving out of the room. My room door closed and we started walking down the hall. I see Courtney and her Mom, who I  had never seen before that day. Courtney and her mom stopped in their tracks, Courtney dropped her bag, and screamed, "Oh my God!" Panic set in, I stopped and stood as close as I could to my friend who was with me. I was thinking I scared someone. Then Courtney said, "I can't believe it, it's you. Reggie Bibbs!!" Relief sat in as Courtney ran over and gave me the biggest hug one could ask for.  Tracey, Courtney's mom came over, but was quite calm, but also gave me a hug as well. Tracey said "You'll have to excuse my daughter she is a little excite about meeting you." Well, meeting Courtney and her Mom will never be forgotten. I remember it like it was today. I'm the blessed one to have met Courtney and her mom. Thank you for what you have done for me.

-- Reggie Bibbs

Thanks for reading this "special edition",


Friday, October 17, 2014

NF and Chronic Pain

One of the predominant symptoms of Neurofibromatosis is chronic pain. This pain develops as neurofibromas grow, compress nerves and/or puts pressure onto adjacent nerve tissue. Pain can also come from bony abnormalities such as scoliosis and tibial dysplasia... the list is honestly endless.

I would put money on it that you could ask anyone living with Neurofibromatosis if they have dealt with some kind of chronic pain at some point in their life and they would say yes. Me included. 

It all started with a headache actually. And I clearly remember that first day of having this damn headache. I came home from volunteering at the hospital and had this throbbing, stabbing pain radiating across my head, spanning ear to ear. I went right to the medicine cabinet and took some Advil, and thankfully it went away. I woke up the next morning, with another headache. Same spot. I took another Advil, and the pain went away. I went through this cycle for a solid few weeks, until one day the Advil didn't work. That day turned into a week. That week, into two weeks. Two weeks into three, I think you kinda get the picture. 

Since I was just diagnosed with a brain tumor, I automatically thought that the tumor was the culprit. The damn thing. I went to my family doctor and he referred me to a pediatric neurosurgeon in Edmonton, and the idea of me needing brain surgery got really real. 

After a few appointments with these brain guru's at the Stollery, it was determined that the area of the brain where my tumor is does not have the capability of feeling pain. So if the tumor wasn't the culprit, so what was? At that point in time, it could have been a number of different things, hormonal imbalances, increased intracranial pressure, problems with my eyes, skeletal abnormalities....

So I pretty much got tested for everything underneath the sun. I was poked so many times I could probably preform a blood test on myself or do a full neurological workup in my sleep... seriously. I saw 6 neurosurgeons and 4 neurologists and nobody knew the origin of these headaches (which were occurring all day every day at this point)

I was on 6 different medications, endured chiropractic and massage therapy, physiotherapy, craniosacral therapy and allergy testing. I also had a spinal tap, tried IV medication, medicinal botox, cut gluten out of my diet, endured acupuncture and even went as far as going to the Mayo Clinic in Rochester Minnesota.  

Unfortunately nothing worked to get rid of my headaches, but I have been able to find ways to cope with my pain over the years, I tend to keep myself really busy, and I find by doing that, my mind is occupied with things other than my headaches. Sometimes taking something like ibuprofen will take the edge off of a particularly nasty headache, but I honestly haven't had a day in over 8 years that was headache free. My doctors think that since I woke up with a headache spontaneously one day, that I will wake up spontaneously one day without one. I am certainly looking forward to that day!!!

So the point behind this post is that sometimes you need to try multiple interventions to treat chronic pain, don't give up after only trying a few things! Keep looking and hopefully at some point in time you will find something that will work for you!!

Thanks for reading,


Friday, October 10, 2014

Reggie Bibbs -- A Modern Day Hero

When I was 16, I was halfway down a dark road, and it felt like there was no turning back for me. I was trapped. I couldn't seem to see any kind of light at the end of the tunnel.

I remember the day that would lead to my life being changed... forever. My Mom and I had just seen a documentary on TLC about Neurofibromatosis, and you guessed it, Reggie Bibbs was the star! I was amazed at this mans courage, his resiliency, his passion. I admired his honesty and his desire to change the face of NF. She later came to me one night, and handed me a piece of paper as she said "This will change your life Courtney Anne!" I stared at the piece of paper with a blank look on my face. How was this paper going to change my life? It's a piece of paper! However, after I read through it, I started to see a hint of light at the end of that dark road.

There was going to be an NF symposium in Calgary, and Reggie Bibbs was going to be the guest speaker! I had never met another individual who was living with NF, so this was going to be a very special experience for me. I was very anxious, I didn't necessarily want to share my story, I didn't still didn't want people to know. I didn't want to talk to too many people. I simply went because I wanted to feel like I belonged somewhere (and my Mom promised to take me shopping!)

I remember arriving at the hotel just like it was yesterday. I had a whole lot of mixed feelings. I was excited however by the fact that there were at least 50 other individuals in that hotel that share the same genetic abnormality that I had. It was comforting. I finally would have people to talk to that would understand me and the fears and ambiguity that I was dealing with on a day to day basis. I was starting to see more light at the end of that dark road.

My Mom and I were anxious to head up to our room to unpack, and as we were traveling up the elevator I said "Wouldn't it be cool if Reggie Bibbs was on the same hotel floor as us?!?" My Mom and I both agreed that it would be pretty cool, but highly doubted we would get anywhere near him until tomorrow's symposium. Boy were we wrong!

As we walked down the hall, someone's door opened and two people stepped out of the room. I. Was. Shocked. It was Reggie Bibbs! I must have stared for what seemed like hours, because I could tell he was uncomfortable with my rather intense gaze. Then I realized what I was doing. Reggie didn't know me or my story. He didn't know that I knew who he was. So what did I do? The only thing that seemed to be logical at the time. I screamed his name and ran down the hall and threw my arms around him. That light at the end of the road now? It got a little brighter at that exact moment.

Reggie, my Mom, and myself shared a few moments of time with each other before heading our separate ways, but we promised to meet up sometime the next day at the symposium. The excitement was mounting as the night stretched on and it seemed like forever until tomorrow finally came.

 The speech Reggie delivered during the symposium that next day is what changed my life. Saved my life rather. I learned more in a mere 15 minutes of him talking, than I had tried to teach myself in the 3 years leading up to this. I learned that it was okay for me to be different. It made me who I was, and regardless of how much I wanted to change it, I would never be able to get rid of my condition. I was unfortunately going to have to deal with tumors, chronic pain, and ambiguity for the duration of my life, but Reggie taught me that I still needed to live. I had lost the meaning of life before that symposium, I was angry, and mad, and upset that I was given the short straw and put through hell. But Reggie Bibbs, you turned that short straw into something unstoppable!

So now looking down that road that was so dark before? All I could see was light!