Note: This will probably be very boring and way too descriptive for everyone but me. But if you want to know more, read at your own risk of being overloaded. I want to put this down so I will remember it. It’s a record for me. This explains why I had the surgeries and how I found out about all that was going on. I promise I’ll do a fun update after this one.
Well, I’ve known that I had neurofibromatosis type 1 (nf) all of my life. However, for all of my life, I had no symptoms other than a few café au lait spots. See the picture below for an example. This is from a google search, not from me.
In college, my junior year (so 2007 or 2008), I saw my first tumor, on my ribcage just under the skin. It was about the size of an almond give or take. A little while later I noticed a few more on my ribcage, back, and abdomen. I saw a regular doctor about it, basically told her what it was (she agreed, how nice) and I saw a general surgeon about it. He was going to remove them, but I decided not to bother with it because I was too busy with school. The tumors were/are painful when they are hit or bumped, so that’s why I wanted them gone.
Fast forward to 2011 right before summer. I was noticing more and more pesky tumors (all under the skin). Most of them were in inconvenient places where they would often get pushed on, and that really hurt. I also started to wonder if I had a little more going on. I had some building symptoms like leg pain, dizziness, neck pain etc. that I thought could be related. I did a little research, found out that there were 2 NF clinics in Houston, picked one, and made a phone call. It was between Children’s Hospital (yes, they treat adult nf patients in the clinic) and MD Anderson. I called MD Anderson, and got an appointment set up for summer.
At the appointment with my neurologist I mentioned a TON of symptoms and weird things I was noticing.
- dizziness when standing or bending up and down, to where things would go black and I would have to steady myself before moving on
- slight dizziness/unsteadiness when closing my eyes to wash my hair, also in the dark
- shooting pain from my leg/back all the way down to my foot in my right leg
- very stiff neck that was painful to turn, I never wanted to turn around or turn it much to the side
- feeling unbalanced
- feeling clumsy
- tripping a lot on my right foot (I ruined a pair of Toms from that later in the fall)
- feeling like I was sitting on something under my leg when I wasn’t, sometimes it hurt
- lots of headaches
- super sensitive feet-I could feel the texture on the linoleum floors in the kitchen and bathroom, and my feet didn’t like it. Ever see a cat with tape on a paw or two walk? Kind of felt like that.
- cold hands and cold feet
- numbish and tingly feelings in some of my fingers (usually starting with the pinky and 2 or 3 in)
He listened very well, and asked questions that made me know that he knew exactly what kinds of things I was talking about. He said he thought I had a tumor somewhere on my sciatic nerve and possibly one compressing my spine. He ordered a couple of MRIs and another scan that confirmed the diagnosis, a large tumor on my sciatic nerve and 2 tumors compressing my upper spine aka c-spine. It was that easy. I met with a neurosurgeon that also specializes in nf. We scheduled the spine one for December, when I would be out of school, and would later schedule the one for my leg for the summer.
As I got closer to December, my small symptoms were becoming a big problem. I was in lots of pain. I didn’t want to turn my neck much of all. I had a constant headache. I was tripping all the time, and even fell a couple of times (carrying my giant heavy teacher bag of course!). I was really unstable and unsteady. I had trouble lifting my legs to get dressed and to get up the stairs. I had to wear slipper socks all the time because my feet were so sensitive, and cold! Sometimes I wore gloves at home because my fingers felt so cold. Basically, everything that I had been experiencing was getting worse. I think that the first surgery came just in time. I was still able to function where most people either didn’t notice I had a problem, or just thought I was being clumsy. I was also still able to teach without too much issue.
Now that I’ve had both surgeries, pretty much all of that is gone. I don’t mean decreased. GONE! Things aren’t perfect (I’ve still got lots of small tumors) but they are pretty darn close. I just wanted to get that out there, so I can remember how far I’ve come and also keep track of things if the tumors start to grow back.