MTS = Surgery bound
I get this whole post together – all I need to do is wait for morning, make sure it made sense – and this morning – it’s gone. Blah.
Writing Surgery bound blog take two….
We’ve been on the surgery path before (Summer of 2012). We’ve done everything we have needed to get done and in a Surgery Conference, the neurologist team made the decision for Ryan to NOT have surgery last year because it just didn’t look good at the time. When he was in the hospital for 2 weeks for the long term monitoring last August, he didn’t show any seizure activity. That’s what put a halt to the surgery last year.
This year, however, when we were in the hospital and did long term monitoring for just a week, they had seizure activity on the books within the first few days we were there. After the full week, they had enough information on Ryan’s seizures and spikes so they sent us home.
Just when I think I get my head wrapped around the fact that the ‘cure’ all end all for seizures and MTS is surgery, we’re now talking about actually doing it. We had a followup appointment with Dr. H on Tuesday and as of Wednesday, we started Ryan on a second medication to stop the breakthrough seizures. When his threshold is lowered, meaning when he’s sick or has a fever, his body is trying it’s hardest to fight off the fever and illness – something happens and it aggravates his brain – which makes him seize. I thought the appointment on Tuesday was just to discuss adding the second medication so we have something that will stop the breakthrough seizures…Boy was I wrong.
Dr. H went through our options.
1. Surgery – which would stop the seizures by 70%.
2. VNS – Vagus Nerve Stimulation – which would get rid of the seizures by 20-25% and basically just control the seizures.
3. Medicate – add a second medication and find the exact combination that would work best for Ryan. When he grows – adding additional doses of those medications due to his growth and again – finding that exact combination that would continue to work best for Ryan as he grows.
Knowing all of those options, and knowing that the left side of the brain where the seizures are coming from can teach the right side to do the same thing, causing his adolescent seizures to be totally out of control…we had to discuss the options.
The Dr. looked at Ryan’s dad and asked what he thought. His dad looked at me and asked what I thought. I told him and everyone else in the room that I was open to what was going to best help Ryan grow and not seize. His dad agreed and said he was sick of just increasing medication and if MTS wasn’t going to be totally taken away with medication, but there is a good possibility it would with surgery, he thought we should be talking about that and looking more into it.
Because of the timely process it took the last time, I was expecting the actual surgery would be next year sometime. We would need the four 2-hour appointments with Neuropsych right? And the PET scan? And the EEG? And MRI? Right?
I was in shock. Complete. Shock. And in some instances, I think I still am! I knew the talk of surgery for Ryan was coming, but I didn’t think it was going to be THIS soon.
Before we do anything – we will need to meet with neuropsych and have a conference ourselves with the neurosergeon, neurologist, nurses, me, Ryan’s dad, and anyone else they invite. Once this is complete – which could be a matter of the next few weeks, the OR will be booked and we’ll be in the hospital for a bit.
The surgery is done in two parts.
The first part: the doctors need to know exactly where the activity is happening on Ryan’s brain. They have an idea from the EEG, but because everything is happening inside of his skull and in different parts of his brain – and the EEG only picks up the area the activity is coming from, they need to get inside and get an idea of where it’s all at. So they’ll put electrodes all over Ryan’s brain. They’ll close his head back up – with those electrodes still on those parts of his brain, and we will be in the ICU for at least 24-hours. Ryan’s medication will be slowly taken down, so they can get him to show neurological seizures – so they know exactly where that activity is coming from. Once they have a good understanding of that, we will all meet – Neuro, Neurosurgeon, me, dad, etc – to discuss it all. They will give us the understanding of where the seizures are coming from. What part of the brain it’s happening in, what happens in that part of the brain developmentally, and we’ll make a decision from there on what is best for Ryan. We will all weigh in.
Will we choose the resection as an end result? I don’t know. I don’t even think the doctors know that.
Will we choose to take the electrodes out of Ryan’s head and not do the surgery? We don’t know that either.
What could this mean?
If the resection is done and the bad, scarring, habit forming part isn’t there anymore – Ryan could be seizure free!! FOREVER!
Does this mean he won’t be on medications? No. There is a possibility he would be on medications for at least a year or two even after the resection to make sure the seizures are under control and taken care of. Once we start lowering the medications to taper him off, we’ll go from there.
Does this mean he could lose development?
Absolutely! Any part of anyone’s brain that is taken out could be an important part of development for that person and something they can’t live without. The area they believe Ryan’s scarring is – is in the temporal lobe on the left side. This has control of his speech and language (something he is already lacking) and memory. I won’t even go into the thoughts I have of him losing either one of those things completely.
How long would we be in the hospital?
Depending on how long it takes for a seizure to occur after the first step and for Ryan to eat, drink, urinate, and have a BM, we could be in the hospital between 3 days and a month.
If at anytime in the coming weeks the neuro team or Ryan’s dad and I agree surgery is not the answer for Ryan, or if the neuropsych eval doesn’t go as planned, or the discussion with the team ends up being that the risks outweigh the benefits of having surgery, it may be that we decide Ryan doesn’t have surgery. At this time, surgery seems to be the best answer for Ryan.
Please keep Ryan in your prayers. Pray the good Lord will restore my boy and heal him. Pray for his recovery – as it could possibly be a very long road if the resection is done, he loses any of his already made development, and doesn’t get that back right away. Pray for all of us – Britney, Me, and everyone who supports us. It’s going to be a long road ahead…
As always, thank you for caring and reading about us. That support alone is enough.
Have questions? Shoot me an email or leave a comment below!