arachnoid cyst

*Disclaimer* In case you don't make it to the bottom of this . . . We are NOT telling Ted right now about all of this as he would worry about it way too much for way too long. So please don't say anything to him. Read on . . .

Monday, August 22 - We saw Ted's pediatrician b/c he had been having headaches a lot during the summer. The headaches had become daily and bad enough for him to stop doing things and complain regularly. He asked me what he should do if he got a headache at school which made me call for an appointment. We decided that we would get his eyes checked and spend two weeks looking for food or activity triggers for the headaches. That same day we got his eyes checked. He did need glasses for a small prescription.

Friday, August 26 - Ted got his glasses. He loves them and does a really good job taking care of them. They make him look so cute and smart. A lot of times the glasses end up sliding to the end of his nose and we call him Grandpa! I got glasses in the 1st grade so this wasn't shocking to me.

Tuesday, September 6 - We had a follow-up appointment with the pediatrician. The headaches hadn't been affected either way with the glasses and we found no food or activity trigger for the headaches. We decided on a CT scan to rule anything out.

Friday, September 9 - We had a CT Scan at Ruby Memorial Hospital. Ted was a real champ and did a great job laying still on his own.

Thursday, September 15 - The pediatrician's office called and said they saw a spot on the CT scan and wanted to order an MRI.

Friday, September 16 (9:00 am) - Ted had an MRI at Ruby. The IV nearly sent him over the edge. They gave him some sedation as he probably wouldn't/couldn't lay still after the IV incident. After he woke up, the PICU doctor that oversaw it told me it was the same sedation that Michael Jackson used. Real nice!

Ben's iPad has been a huge source of entertainment as we've
waited a lot in waiting rooms and talking with doctors. This was pre-iv.

Same Day 6:30 pm - We were on our way to see the Lion King (which was AWESOME to see it with our kids) when the pediatrician called. He said that Ted had an arachnoid cyst on the left frontal lobe of his brain. We knew what that was right away b/c Ben's cousin, Cameron, had just had the same type of cyst drained several weeks before at Ruby.  Our pediatrician had called the neurology department at Ruby and they happened to have an appointment for the next morning. It freaked us out a little bit. But it was really just a Saturday clinic that they run once a month.

Saturday, September 17 - We met with a pediatric neurologist. She asked us LOTS of questions, examined Ted, looked at the MRI, and said that she would talk with the pediatric neurosurgeon to see what our next course of action would be. She asked if Ted has had any sort of head trauma. Oh, no, that would be our other child who has had a concussion and a seizure.

Wednesday, September 21 - I got a call that we had an appointment scheduled with the neurosurgeon in late October. However, his physician's assistant had an appointment next week. We agreed to take that. It seems best to take the in's that you can get instead of waiting. 

Wednesday, September 28 - We met with the physician's assistant who asked the same questions and did the same examination of Ted as the neurologist. She left to go look at the MRI and then the neurosurgeon came back in. That was a surprise.

He spent an hour with us. We know more about the human brain than we ever imagined. It is a beautiful, amazing part of the body. Basically, the size, shape, location and pressure that the cyst is putting on Ted's brain, led the doctor to offer us surgery. The MRI picture was quite telling in the way the left side of his brain is squished up. And there's a knot on Ted's forehead where the right side of his brain is pushing against the bone. This is the main indicator that he's had it since birth.

Friday, November 18 - So we have elected to do the surgery. It's more a "when" than "if" he would need it. The doctor affirmed us that if we did it now, his head and brain are still growing and would allow his brain the room it needs to realign itself properly.

It cannot be done as a laproscopic surgery b/c of a blood vessel that is laying across the cyst. He will have to take a piece of the bone out and trim the edges of the cyst in certain places that will allow it to drain in a natural direction. Then he will disconnect the blood vessel. If he left the vessel, there wouldn't have anything to cushion it and he would be more susceptible to a brain bleed if he ever had some sort of head injury. The neurosurgeon has assured us that this is a "look but don't touch" operation. They will be able to see his brain but will not touch it.

This was a really hard decision for us to make as far as what is best for Ted now and best for Ted in the future. We felt very informed as far as what the doctor will do, how he'll do it and the criteria that the cyst had to meet for him to even offer surgery. I wish he would've just told us that we had to or to wait a certain amount of time. But he didn't. So we're doing what we think is best.

We are NOT telling Ted until a day or two before surgery. He does listen at Dr's appointments but obviously not very well. He told my mom that he has headaches b/c a piece of his brain is missing. Close! He's so anxious about things and worries a lot that we don't think it's necessary for him to worry for what would seem like forever to him. So, please don't ask him about it if you see him and pray that this is the right decision at the right time.