#thirdtimesacharm

As many of you may already know my battle with my tumor is far from over. I am one of the unlucky 10% that radiation treatment did not result in tumor control, meaning my tumor is still growing. So it is easier for me to write all this information down and just share it with everyone. So it make things easier to follow I will start from the beginning.
My tumor is a acoustic neuroma. Another name for it is a vestibular schawannoma. It is formed from a mutation of the myelin sheath around the vestibular (hearing) nerve. My first symptom of this tumor, who is named Earl, was losing my hearing on that right side back when I was still in the first trimester, pregnant with Autumn. Things developed over the course of my pregnancy. I experienced facial numbness, right sided facial weakness, dry eye on the right, inability to feel my tongue or teeth on the right, and eventually vertigo. The vertigo I experienced was like being drunk and having the room spins.
I had Earl surgically resected in November of  2011. Earl was big. I don't remember his exact dimensions but he was over 4 cm. Now my mom likes to ask me about the hormones so I am going to clarify something. My pregnancy did not create Earl. I already had Earl. My pregnancy DID HELP speed up his growth but he would have grown with or without being pregnant just probably at a slower speed.

Earl in October of 2011 prior to surgery

Two pieces of Earl were left behind that were stuck to my facial nerve. To preserve my facial nerve and improve my quality of life these pieces were intentionally left. It is horrible to have no feeling in your face. Your eye feels like it is constantly burning. After surgery all the things I described earlier got better. My biggest fear is having to experience those symptoms again.

Earl in January 2012

After surgery growth was seen from the beginning but if it is less than 1mm it is hard for them to tell if it a marginal error or difference in MRI machines slicing of the image. Therefore time was needed to see if Earl was in fact growing. In January 2014 I was given the option of having another brain surgery or trying stereotactic radiosurgery (the radiation). The radiation is far less invasive and has a success rate of 90% so I thought heck yes! Surgery is rough. But my radiation did not stop Earl.

Left is January 2014 prior to radiation. Right is last week March 2017

So here I go again. There are 3 treatment options for acoustic neuromas: observe, brain surgery, or radiation.Radiation did not control Earl so my only option is to have surgery.....again. I met with my neurosurgeon and they informed me they will do everything in their power to preserve my facial nerve, which means so much to me! I will meet with ENT here shortly to discuss my coming up surgery. I have some factors such as scar tissue and radiated tissue that make my case a bit more complex but I have faith that it will all be okay. 

I have my bad days and my good days. My husband, my rock, my support is absolutely amazing at calming my anxiety and helping me look for the glass half full. I may have to have more brain surgeries than the average person..... but I have to look at the positive and I have to smile at my beautiful daughter. What is the point of fighting so hard to protect a facial nerve if you do not enjoy the days you have with a functioning one? My neurosurgeon told me, "You can live a quality life and perform your daily activities with a tumor in your head. You have been doing that for 6 years. You will continue to do that."