Update on the Tumor

Well it is Monday and I said I would post an update after the appointment with the Neurologist. So here it is!

As suspected, the Neurologist said it is an Epidermoid Cyst and therefore the tumor is benign. However, that was about the only good news we received. The Neurologist said that the tumor is quite large. The cyst is larger than a golf ball but smaller than a tennis ball. So you can only imagine the size of this thing. According to the doc, Epidermoid cysts are congenital. This means he has had it since he was in the womb. Throughout time, the cyst has slowly grown so large that it has been affecting his balance, vision, hearing and giving him major headaches every day all day!

The risk with a cyst (tumor) this size is that it is basically encompassing his whole left cerebellum and is putting pressure on the brain stem. The brain stem controls all major functions such as your heart, breathing, etc....The cyst is putting so much pressure on the brain stem when you are looking at the MRI, it shows the brain stem going straight through the spinal column and up the neck but once it reaches the area near the tumor it forms a backward "C" shape so the brainstem is seriously out of alignment. This makes surgery very difficult because the brain stem is in the path of the cyst. So they have to be pretty precise when removing the cyst from that area.

The neurologist is also worried about the cranial nerves. The cyst has grown through and around some of the cranial nerves. The cranial nerves control facial expressions, eye movement, tongue movement, swallowing, taste, hearing (auditory equilibrium), chewing, and so on. Basically these nerves control movement from the shoulders up. If any of these nerves are compromised, he could lose movement on his left side. So this again is something that makes the surgery more complicated.

After going over all of our options, it seems the best resolution would be to remove as much of the tumor as they can without compromising any of the cranial nerves. I think the neurosurgeon would have preferred surgery right away, but admitted this was going to be very complicated and wanted to get a team of specialists together to evaluate his condition and collectively determine the best possible course of action. He has stated the surgery will take a minimum of 8 hours but could take as long as 12 hours with 2 days in the ICU. Once moved from the ICU, he will have an additional 4-5 day stay for observation. Of course this is based on a "near perfect" scenario. If he does have complications, the stay could be up to a month.

There are also risks of the toxins and fluids stored within the cyst leaking into the spinal fluid and filtering into Tracy's bloodstream and causing "chemical meningitis." I know… it sounds bad. We were a bit freaked out too. The word "meningitis" brings a lot of scary things to mind. The doc said that if this happens it can be flushed out with antibiotics and such but it will cause him to be violently ill.

So where it stands now, Tracy has an appointment tomorrow to test his hearing to see if there is already nerve damage. I don’t think his hearing is selective anymore! The neurologist told us he will call on Monday…hopefully with a game plan. Obviously there is a lot more that we had discussed with him. It was information overload! But this gives you the gist of his situation.

Even if the surgery goes well, his brain has to expand into the space that the tumor occupied and the brain stem will have to reposition which can affect some of his functions during this process. If they cannot get the whole tumor out, he will have to have regular MRI's to continually track the growth of the portion that remains.

We have a long road ahead of us but are staying positive!

Thanks again to everyone for your well wishes and prayers. I hope to post often and let everyone know how Tracy is doing.