#1: orchiopexy and circumcision
#2: the chiari
#3: Ear tubes
Which brings us here…number four…..another brain surgery.
Because our appointment was done right away with the neuropsych eval, the nurse was able to get us in a week or two later to discuss surgery with the neurosurgeon and neurologist. That was a few weeks ago now. Sometimes it takes more time than others for me to get the updates out…
We got to the appointment where the Neuro and neurosurgeon were both there. The neurologist went over everything that he had done before with us. What we know is Ryan has a Chromosome 18 abnormality and epilepsy. With that, Ryan also had a Chiari and also has MTS – both of which may or may not be the reason for his delayed speech. The neuropsych doc seems to think Ryans speech has been reorganized to the right side. Kid Brains are so cool!
The neurologist wasn’t with us very long during the appointment and just went through what we already know….the neurosurgeon took over.
The surgery will consist of two phases. Both need Ryans head shaved as they will make an incision in the shape of a T – just above the ear to the middle of his head and down the middle of his head.
Phase 1 – which will last around 4 hours – they will be cutting and opening Ryan’s skull to implant electrodes on the brain tissue. They want to make sure there aren’t other areas of the brain affected by the seizures so placement of the electrodes is very important to give a true picture of where the seizures are coming from. These electrodes are much closer to each other as compared to the electrodes during EEGs.
After placement of electrodes, the bone is just fixated back to Ryan’s skull, using staples to secure and a head wrap will be put on. There will be a drain put on the outside of his head for any fluid and blood drainage. Ryan could be out for hours and possibly for the night – after surgery. We will stay over night at least for the first night in the PICU.
So after this phase and we are out of ICU, they’ll send us upstairs where we spend most of our time at Children’s. They will monitor seizures, wanting to have them as this will give the doctors a very good and the best idea if where the seizures are coming from. The neurosurgeon wants to see many seizures like what we see at home as they will not just take any part of his brain out just because. They want to see where the seizures are for sure. Once he feels they have seen enough, he will discuss with Ryan’s dad and I on where to go next.
Then we have at least two options: it will appear straight forward and all the seizures are coming from the same area, or it may be more complicated and the seizures don’t all come from the same area. The areas of the brain to be resected will be discussed and decided upon as to how much tissue to remove.
So in that meeting the surgeon has with Ryans dad and I – it is our decision to move forward with Phase 2. For the language part of the brain, it may be harder to see in the brain, but want to be very careful not to disrupt the language areas.
Phase 2 – This is the resection phase – removing the tissues where the seizures are. The neurosurgeon said sometimes in Phase 1 they don’t get a clear picture of where the seizures come from so they may have to go in, move the electrodes to a different area of the brain, and monitor for seizures again.
If a resection is done, its possible Ryan can go home 2-3 days post surgery. That will obviously depend in how comfortable we all feel about the recovery and Ryans status.
The neurosurgeon went through the risks to the surgery. He went through the worst first…
— Death – <1%- its never happened that he knew of.
— Stroke – 1% – injury to the brain.
— The more tissue removed, the possibility of removing vital motor skills as well.
— 3-5% chance of having to remove the electrodes early due to pressure in Ryans brain.
— infection – 5% – due to electrodes on the brain. Antibiotics will be prescribed to prevent infection.
— spinal fluid may leak around the incision.
— 10-15% of children are not helped by this surgery.
The goal in all of this is seizure freedom.
In a child who just has epilepsy, to walk away seizure free is 80-90% possible. They think because of all of Ryans other medical issues, the possibility of Ryans seizures to be decreased or for him to be rid of seizures all together is more around 60-70%.
Ryan will continue to be on his antiseizure medication after surgery for a period of time.
I asked the neurosurgeon specifically when he thinks the MTS started. We reviewed the MRIs Ryan has had throughout the years and it seems it showed when Ryan was 3 – in July 2011.
A functional MRI will be scheduled about a week from the surgery. An MRI and CT will be done after phase 1 to be able to monitor any issues.
Depending on how Ryan regains his stamina, strength, and energy, he will be able to return to school and daycare. This is very individual for each child.
The FMRI is scheduled and Surgery is scheduled for a week later – the same week of Britneys birthday in December and we hope and pray to be home by Christmas.