Autumn's Surgery

Here is a copy of an email I sent out:

We met with the neurosurgeon on Monday. The plan is to move forward with the grids on Tuesday, June 1st. The grids will determine if they can locate an exact location where the seizures are coming from and if that part can be removed without damaging important functions. There is a chance they would put the grids on and determine they cannot move forward with surgery, but the doctor did not anticipate that to be the case. They do know that the seizures appear to coming from the anterior frontal lobe, which is good because that is further away from the motor strip (which they do not want to go near.)

There will be a minimum of 2 surgeries. One for the grid placement and one for grid removal and actual removal of brain. There would only be additional surgeries if they determine they did not remove enough during first removal. Because Autumn doesn't have an abnormal MRI or actual tumor, the doctors only have electrical readings to determine where the boundaries are for what they decide to remove. They try to be as conservative as possible. The grid surgery will take around 3 hours then she will be in ICU until the next day. Then she will be moved to the epilepsy monitoring unit for observation for a few days. It just depends on how long it takes for them to get the information they need. She will be off seizure meds and we will be hoping to see seizures so they can get the information they need. She will be on pain medication. The most common side effect is headaches. Then she will go back in for surgery (we do not know how long that will take, hours
though) and again to ICU overnight, then back to EMU for more observation. The least amount of time we are talking about being in the hospital is around 2 weeks. Her recovery period just depends on each individual case.

There are different levels of success. Seizure free with no medication/less seizures with less medication/no change. The doctors (there is a team of them) all agree this is the next step and that they would not consider it if they did not feel like it would benefit her. However, the "mathematical" seizure free rates are 40-70%. Real lifetime #'s are lower. They discount any seizures post-op for 3 weeks because brain surgery in itself can cause seizures.

Our doctors have done hundreds and hundreds of surgeries and the hospital did over 120 last year. The top pediatric hospitals in the country average 100 surgeries a year. They usually average 1-2 pateints a week so they can focus on each case. They have only had 2 children get an infection in the last 14 years. But there is a real risk of infection, bleeding and even stroke. Bleeding is the most common problem and they do expect a certain level of bleeding simply because of the nature of the surgery. The doctors did put everything in perspective though and said we have a better chance of getting seriously injured in a car on the way to the hospital. Fortunately, we don't deal with statistics because God is bigger than that! Another complication could be muscle tone weakness on the left side of her body. She is right handed though so that is a positive. That can be temporary and recovered in rehab or permanent.

To sum up why we are moving in this direction:
Autumn's seizures are considered poorly controlled. In the last 4 years, she has tried and failed 8 different medications. Including 3 in the last year alone. The 2 medications she is currently on do not even control the seizures that well and they have worked the best so far. One of the medications she is on, has severe side effects, including bone-loss and possible brain shrinkage if used long-term. She has already been on that one for almost 4 years. Although many of you have never seen her have a seizure, she has them weekly while she is sleeping or while trying to fall asleep. So her rough time is usually at night when nobody else is around. In fact, recently she has been averaging 3-6 seizures nightly. If things stay the same she will have an increased chance of injuring herself during a seizure or even a possible chance of SUDEP: www.epilepsy.uhhs.com/sudep.htm
The doctors have been very patient with trying to treat her epilepsy and have waited even longer than they really wanted to do surgery because of Autumn's intellectual development. We have been patient too, but feel that this is the next step. We have a hope for Autumn's future that includes her being seizure free. We see her being able to drive a car and carry a child. Right now that is not in her future. We want to thank you all for praying for us and Autumn throughout this journey. We feel hopeful that this is the beginning of the end. This next step will not be fun and it scares us very much, but we know that each of you are praying for us, supporting us and encouraging us each step of the way. Thank you all!


Amy and (Mike) Godknecht