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,

Court


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