Monday, September 21, 2009

The plan

The surgical conference isn't due to meet until 11:30 but Dr. Chugani and Dr. Asano just paid us a visit with their findings. The areas involved are her temporal, occipital and parietal lobes. This is the bulk of the nastiness that is causing her seizures. Her frontal lobe is normal which we were really pleased to hear. Unfortunately, part of her motor cortex has spiking too. Ideally you would want it not to be involved at all, because if any of that has to be removed it can cause permanent deficits on her right side. However, there is a procedure called MST (multiple subplial transection) that can preserve the motor function while suppressing the spiking that can cause seizures. In this procedure they make small vertical slices through the nerve fibers. Dr. Chugani said this procedure is not guaranteed...she could still have some spiking that would cause seizures. But it's a nice balance between being conservative and liberal and if there is any spiking it should be able to be controlled with medication.

He said if it was his child this is the route he would want to take. That speaks volumes and we agreed that this is the route to go. The other option would be to entirely remove the motor cortex...this would ensure seizure control but would leave her with a limp and a useless right hand. There is no way we can choose that option at this point.

With this option we do run the risk of having to repeat the surgery at some point when she's older. But Dr. Chugani feels this will get us through the critical early years when cognitive development is so important and that removing the three lobes previously mentioned will improve that. And hopefully that won't even be an issue and this surgery will take care of things. It's a bit of a gamble but one we're willing to take. In his words, at least we will know we gave her every shot to have full motor function.

The conference still has to take place and Dr. Sood needs to be in agreement before any of this is a go so we'll get confirmation later this afternoon but most likely this will be the plan. Keep those prayers coming!


JSmith5780 said...

A good friend's son has LKS. He had the MST surgery done about 3.5 years ago. He has been SF since that time. All function was retained, but the seizures were stopped. I am sure the procedures has been perfected even more at this point. I would hold this as a sign that MSTs can be very successful.

Good luck!

Helen said...

Sounds like a plan and sounds like your in very capable and CARING hands. The medical world is amazing. How is little Julia today? We will continue to pray for a successful surgery and a quick recovery.

baby trevor's mommy said...

This is one of the things haunting my heart from now until October 9th. At this point we too could never choose to remove his motor cortex. He's WAY too mobile...and understands WAY too little to put him through that yet. If it's presented to us...we'll roll the dice exactly the same way. Not that you need to know all that! *smile* Just...from a few weeks behind you...I understand.

Anyway...I know you're happy that this is moving closer towards going home. (((((hugs)))))))


k said...

Thinking of you guys all the time. Love, Aaron Jennifer + Ada.

blogzilly said...

I think it's the right call too.

And why do I think Dr. Chugani was such a great doc? Because he is not afraid to say the 'If this was my child this is what I would do' thing. Most docs do NOT have the cajones to say that kind of thing.