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


  1. Courtney, thanks for sharing your journey with NF with the world. I too have NF and I am trying to bring awareness also. Next year I am attempting to complete my second half ironman, while wearing a Tri suit with the BCNF logo and wording on the back of it.

    1. It's always nice to talk to people who are passionate about raising awareness for NF. Maybe we will meet sometime soon? I have been to 2 of the BCNF symposiums now, and hoping to go to more in the future =)