Wife. Mom. Acoustic Neuroma Warrior.

Say “farewell” to my little friend!

When you get the brain tumor diagnosis, you learn 2 things. 1. You are stronger than you imagined. 2. You are loved more than you know.

Every Acoustic Neuroma Warrior experiences different symptoms. Size doesn’t define symptoms.

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What exactly is an Acoustic Neuroma (AN)?

An Acoustic Neuroma is a benign tumor that is found on the 8th cranial nerve which goes from the brain to the inner ear. They are slow growing and do not metastasize, which sometimes leads to a “watch and wait” approach instead of radiation or surgical removal.

AN’s effect every warrior differently.  I have lost 100% of my hearing, and have very little vibrotactile sensation even to very loud sounds. Some warriors suffer facial paralysis and major balance issues because of the tumors proximity to the facial nerve and vestibular nerves. I am very fortunate to not have facial paralysis, but do suffer from minor balance issues.

There it is! The white spot on the right side of the scan (left side of my brain) is the problem. Interestingly enough, the neurosurgeon (who is amazing!) said I’ve had the tumor for at least 5, maybe 10 years. The bone has even remodeled itself around the tumor and just made itself feel right at home.

As I’ve done research on various procedures used to evict these tumors, I was drawn toward something called the Gamma Knife. It was not surgery and I would be back to normal pretty much the next day. Now, as a mom of 2 boys, that was super appealing! The other popular procedure for these tumors is called Translabyrinthine surgery-from what I learned about it, there was no way I wanted to go through a procedure that could potentially have a 6 month recovery! Another surgical option, which I hadn’t done a lot of research on, is called Retrosigmoid. I hadn’t heard tons about it, I don’t think there are as many doctors doing RS as there are doctors performing Translab, so a lot of the chatter in the AN community was about translab and it is definitely a scary option! I was pretty confident I was going to go the GK route, and I was excited about it!

However, as we sat down with the Neurosurgeon at Barrow’s Neurological Institute yesterday, and he described my 2 best options: Gamma Knife or Retrosigmoid Surgery. There are pros and cons to both options, and as I listened to him describe each procedure and what it would mean for me now and in the future, Bryan and I both felt that the best option was Retrosigmoid Surgery. I had completely changed my opinion on the kind of care I was wanting, but I tell you, this Dr. knows his stuff, and is absolutely a hero in my eyes!

The main con for Gamma Knife that led me to choose to go through with the surgery was the risk of the radiation used to halt and shrink the tumor could have a very negative effect and, instead of getting rid of it, there is a small possibility it could turn a benign tumor into a malignant tumor. With the amount of cancers in my family history, I just can’t take that risk. And even though in studies the risk is about 1 in 10,000 but my neurosurgeon has seen it happen to a girl my age and it eventually took her life. That was enough for me to NOT choose Gamma Knife.

Retrosigmoid Surgery: In as simple terms as I can put it- the doctor will cut a circular sections out of my skull, no bigger than the size of a quarter. He will have a neuro otologist assist him in drilling down bone to get into the retrosigmoid area which a little canal leading right to the space where the tumor is hanging out. He will the go in through the opening and start removing the tumor. It will take him about 3-4 hours, as he takes time to be careful not to further damage the nerves around the tumor- the cochlear nerve, the vestibular nerve, and the facial nerve. His is optimistic that he can remove the tumor without destroying the facial nerve, and will even leave the cochlear nerve in there with a teeny tiny chance that my hearing could return (very teeny, very tiny chance). He will then close the area, but the bone back, glue it in with bone glue and stitch me up! I will have to get MRI’s every 2 to 3 years for the rest of my life, but that is something I can deal with!

The recovery for this brain surgery: TWO WEEKS! 2 weeks after BRAIN SURGERY I will be 90% back to normal, with the last 10% taking another 4-6 weeks. This was such happy news for me as it means that I still get to teach preschool this year and take care of my munchkins at home without feeling helpless. I accept any and all prayers sent our way as we prepare for surgery. The date has not been set quite yet but it will be within the next month or two. We are excited and my anxious has turned from scared to eager. I am so glad to have answers and a plan and look forward to kicking this tumor’s butt!

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