“”What does it mean if I’m afraid? Does it mean something bad is going to happen?” “No, it doesn’t mean something bad is going to happen. It just means that you have the chance to be brave.” ― C. JoyBell C.
We finally heard back from the neurologist late Friday afternoon about Emmett’s MRI results.
The MRI showed that Emmett has a build up of scar tissue on the left and right ventricle of his brain. After a traumatic brain injury, tumor or seizure, scar tissue can form. The neurologist said scar tissue can also be due to lack of oxygen at birth and that it was common with premature babies. She asked if Emmett was premature and once Ryan told her that he was actually born at 41 weeks, she said, “Well, we can rule that out.” As far as we know Emmett was never deprived of oxygen during labor and delivery. But we’ve always wondered if it did happen at some point and maybe it was missed.
Since Emmett had a grand mal seizure when he was 2 days old, and seizures every day since, that could be the likely reason the scar tissue has formed, if there were no issues with oxygen at birth. The scar tissue wasn’t seen on his first MRI because he was only 2 days old, and it wasn’t seen on the second one when he was 7 months old. From what I’ve read, it can take six to nine months for the scar tissue to start building up. Chances are that’s why it was only seen on this MRI.
Scar tissue on the brain also interferes with proper brain function. As it builds up, it prevents nerve growth in the brain and interferes with cognitive and motor functions. This is most likely why Emmett is so delayed. It’s been a mystery as to why he’s been so delayed. Normally when seizures are localized to one area, the area responsible for vision in Emmett’s case, delays are common but not quite as severe. The scar tissue could also be why we’ve seen a decline in his vision again, too.
The neurologist said that as of right now, the scar tissue is inoperable because of where it’s located. It’s not just on one side of the brain, it’s symmetrical and on both sides. Maybe some could be removed later on but removing all of it would be fatal. She said that it didn’t seem to be progressive because his brain is still growing normally. She did mention that his brain was more elongated instead of rounded, but that’s because he isn’t mobile.
That’s what we’ve been digesting all weekend. It’s been a pretty “blah” weekend, to say the least. I’ve been feeling really sad knowing that there is something foreign on my beautiful boy’s brain. I just want it gone and hearing that it’s inoperable makes me feel even worse. No one likes being told “no”. My main concern right now is that if the scar tissue continues to build up, it can lead to further deterioration of function. All we can do is monitor the scar tissue and hope it doesn’t continue to build up.
We see the other neurologist in a month (I don’t think we can wait that long so I’ll be calling to book an appointment sooner) and I’ve started a list of questions for him. The main thing we need to discuss is to see if Emmett is a candidate for the other surgery, the surgery to stop his seizures. We need to set up a 2 day EEG to see if all the seizures start in the same spot. If they do, he should be a candidate for surgery. If the area of his brain where the seizures start can be removed, he will have no more seizures. If that happens, hopefully that will stop the scar tissue from building up. I’m not even sure if that would have an effect on the scar tissue, to be honest. So, there’s another question I’ll need to ask the neurologist. The thought of brain surgery absolutely sickens me beyond belief. This is not something we’re taking lightly, but if the doctors feel that it will be successful, we need to try it. These seizures have got to stop. But at the same time, I’m already feeling guilty if we’ll need to put him through all that.
Another thing the doctor mentioned was that he was deficient in carnitine. Carnitine is an amino acid which helps break down fats. This has happened most likely because of the ketogenic diet that he’s on and this is also really worrying me. If fat isn’t broken down it’ll start to build up in organs and Emmett definitely doesn’t need that. She mentioned that there was a supplement for it, but that there isn’t enough research to say if it really does help. The supplement is apparently extremely expensive and most insurance companies won’t cover it. I’ll have to add all the carnitine questions to my list, too. I’ll also contact the dietician at the IWK about that as well to get more details about it.
So, I guess the old saying, “No news is good news” isn’t always the case. It took two weeks to get the results. The neurologist was waiting on the radiologist to dictate the MRI results and when she saw that there was something, she wanted to look at the scans herself (and she went on vacation which prolonged things more). At least we know why he’s so delayed and I’m so thankful nothing else was found. But there are just so many questions. My mind just can’t take a break and sleeping has become next to impossible right now. I just feel so sad. We’re trying our best to be positive and happy around Emmett, which isn’t hard, because he’s such a turkey and makes us laugh all the time. And it wouldn’t do anyone any good if we just sat and cried all day. Granted, I usually have a meltdown at least once a month and may have more for a little while until I can wrap my head around this and ask all the questions that keep swimming around in my head. So, I apologize if I happen to get emotional in front of any of you.
But, there’s a new week starting and we have appointments with APSEA, Early Intervention and a social development worker.
Life keeps moving forward, as does Emmett, slowly but surely. But I’ll wait for my Emmett for as long as I have to.