Painkiller Funnies

So, Zach working in retail around Christmas time, was not able to get much time off for my surgery (in Dec 2011). In fact, he was only able to get the day of my surgery off. I thought that was a little ridiculous of his work (I mean come on, I had spinal surgery, right?!?), but we made it work anyway with help from my parents. I had a late night after surgery and didn't make it to my room until around midnight. The next morning, Zach had to leave for work. I was just a little a lot emotional from the anesthesia and painkillers (I had a pump people! Yeah!). I wanted to put in contacts so I could see, and my glasses were not the right prescription. I couldn’t do it because I was still attached to a million things, including something that would beep and alert the nurses every single time I moved my hand. My face was also very swollen. So Zach was trying his hardest, but couldn’t get my contacts in. I told him, crying of course, “You can’t leave me like this!” (In his defense he wasn’t leaving me, my parents would be coming later that morning) Haha, he finally got them in for me thank goodness!  Then I realized I had double vision, so I had a good cry about that too. I had them bring me an eye patch (Argh!) and that took care of the problem until the double vision wore off a couple of hours later.
Later that day, I was trying to play with my phone. (I think my parents had left, or they hadn’t come?) Playing on your phone can be really difficult when you keep nodding off to sleep and when your eyes keep drifting in and out of focus. A completely harmless activity, you would think though. Oh no, not while on painkillers! So I opened up my Groupon App (Oooh, Groupon. I must have been desperate…)  and looked at the day’s deals. Before I really realized what I was doing, the app thanked me for my purchase. What?!? Purchase? I bought a deal for skydiving for 2, for $249! Okay, I just had surgery on my spine and bought a deal for skydiving, haha. I cried to Zach later when he got off work, and I told him what I’d done. The next day I called them, and they took it off no problem. I was so ready to pull out the “I just had spinal surgery.” card, but it wasn’t necessary. Thanks Groupon!

The Reasoning Behind it All

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.

Surgery is Scheduled!

You can read the rest of this journey here and here.

Well, I met with my neurosurgeon last week.  I was glad my husband was able to go with me. He didn’t get to go with me to review the MRI results, so I think he felt a little out of the loop.

He went over the results of my PET CT and the tumor on my sciatic nerve is “active” but not cancerous. We were expecting to hear this, but it was comforting news nonetheless. He recommended that I get the tumors compressing my spine removed first, so that’s what I’ll be doing. I am really glad that he is able to work with my schedule and has okayed waiting until December to remove the tumors on my spine. It’s just about impossible to take off from school. December 19th is the day. He told me I’d have to spend about 5 days in the hospital. I just had no idea that I’d have to be there for so long.

Until recently, I thought my nf was more superficial. I thought all my tumors were just beneath my skin, outpatient surgery type stuff. I’ve never had any type of surgery or hospital stay. All this is so new for me. I’ll be glad to get it taken care of. After I get the tumor from my sciatic nerve removed (this summer, most likely), things will hopefully be getting back to normal!

Been a While…

Wow, things have been super busy the last several weeks and I definitely need to do some updating. I still want to do a post on our anniversary, our trip to San Antonio, and a few pictures of my new classroom (which is looking pretty spiffy if I do say so myself.) Someone walked in and said that I was “so organized!” Ha, if only she knew…

Anyway, let me get you up to speed. I had my appointment with my neurofibromatosis doctor and he had some suspicions of what could be causing my issues, so he ordered a couple of MRIs. Let me just tell you, those are not very fun. The one of my c-spine was HORRIBLE. I was fine at first, but then I got really hot, like drenched in sweat hot. Then there was also the fact that my head was taped down in this frame thing, and the fact that it took like    2  1/2 – 3 hours. I don’t know, there’s no clock in there, lol. My 2nd MRI of my pelvis was a piece of cake though, and just lasted 45 minutes. I did a follow up with my NF doctor and he showed me the MRI results. Apparently I have 2 tumors that are compressing my spine (not an emergency though) and also some tumors on my sciatic nerve (also not an emergency). He told me it did need to be taken care of within the next couple of months. All the tumors appear to be benign, but tomorrow I’m having a PET CT just to make sure. Then on Sept. 6th, I’m meeting with a neurosurgeon to discuss my options. I am relieved to finally know what has been causing all my random problems. Hopefully, I care take care of one of those issues during Christmas break.

In other news, school starts on Monday and I met my kids tonight. I think I have a pretty good group! Third grade will be different, but not in a bad way. More on that later; I’m exhausted! 

Living with NF

Well Zach’s hernia surgery went pretty smoothly. He’s still sore but is finally starting to get around again. I’m thankful everything has gone so well.

In other news, I have an appointment scheduled in July with a neurofibromatosis specialist. Neurofibromatosis is a disease that affects everyone differently, so all I can do is tell you how it has affected me. I’ve known I’ve had it all my life. Up until about 4 years ago, the only thing I knew about my nf was that I got it from my dad and that I had some café au lait spots on my body. The spots never really bothered me because they aren’t super noticeable and kind of just look like birthmarks.

In college, things began to change a little. I started noticing a couple of painful tumors on my ribs and in my abdomen. The tumors were hard to see, but you could definitely feel them. They were quite painful when bumped or if I laid on one, like while trying to relax or sleep. I looked at getting them removed (about 4 or 5) but didn’t because it was hard to schedule any appointments without missing any “college.” Neurofibromatosis is a progressive disease. That means it gets worse as time goes on. Since my nf has been pretty mild all my life, I’ve never really seen a doctor about it. But now, I’m pretty sure I have around 20 tumors (probably more) and I really think that I need to get a doctor that can actively monitor it. Nf can lead to things like cancer. While cancer from nf is pretty rare, I just don’t think it’s a good idea anymore to do guesswork on how many tumors I have, or how much they have grown.  I’m super excited about seeing this specialist and getting my nf under control.  Since they’re in a lot of places now, it can be hard to get comfortable without hitting or smushing one somewhere. I mean there are only so many ways I can lay when they are on my head, both sides of my ribcage, abdomen and armpits. Now I’m noticing that a lot of my shirts are bothering me due to a few newly discovered tumors.

I’m honestly not trying to complain or get you to feel sorry for me. I’m really blessed that my nf has been so mild for so long. Do any googling on nf and you will see how bad it can get. I’m excited about seeing this doctor. This will be the first doctor I’ve seen that really knows much about the disease. I’ve been doing some reading on him, and he’s supposed to be one of the leading experts on nf. I’m blessed to live pretty close to MD Anderson. They have one of only few nf clinics in Texas. After I see Dr. S in July, I will blog about my appointment. Have you heard of nf or do you know someone with it?