MRI call back

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acl1974

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My 19-month-old daughter had three tonic clonic seizures early last month and spent two nights at a Children's Hospital. She did hit her head when she fell (was just standing in front of the TV so fall was for no apparent reason), but she also had some staring and shaky arms a couple of days earlier when my MIL was watching her. She mentioned it to me, I didn't think it was anything until she had the first of the three seizures and I realized how wrong I was at the time.
So, she had a short EEG, which was normal and they are going to get a 24 hour one in the coming weeks. We went in yesterday for an MRI, which they had to put in an IV and sedate her for. Four hours after we got home the hospital calls and said the radiologist wants her back within the week for more scans, this time with contrast. So, I'm guessing this isn't good news. I am hoping the first scans weren't clear enough or something, but I imagine that they wouldn't want to sedate her again unless they saw something out of the ordinary. I hope I'm wrong. I was hoping for some feedback from people who are more knowledgeable about these tests. Anyone had a callback? Was it nothing, just precautionary? What could it be? I, of course, am worried about tumor. I am probably just panicking. Anyway, I'm new to the thread. My daughter is on Keppra, which either is working or she had a fluke cluster of seizures and will never have them again.
Thanks for reading.
 
They most likely will sedate her again. this is done just so that they can get clear photos in children because otherwise it would be hard for them to lay still for too long.

Its possible that she moved around while in the MRI and the pictures came out blurry. Iwill cross my fingers for you both
 
I'm sorry you're going through this. The waiting is excruciating when it has to do with your child! My first reaction too was that his seizures were caused by a tumor, but I've since come to find that most of the time there is no reason, especially when there are no other neurological symptoms. I am somewhat suprised that they didnt' do the contrast the first time and be done with it. They can show blood vessel abnormalities better with contrast, from what I understand. Best of luck to you both.
 
Hi acl1974,

The second MRI is an "MRI with contrast" -- it's different from the plain old MRI, and is usually used to look more closely at vascular issues (blood vessels and blood flow) in the brain. Since the MRI with contrast involves injecting dye, the doctor may have waited to order it until he got a sense of how your daughter did with the regular MRI. It's not unusual for a doctor to order both. You should feel free to contact the radiologist with any concerns and questions though, just to set your mind at ease.

I had a "callback" MRI: The first time round showed something that might have been a problem with a leaky jugular vein -- but it could also have been a migraine-related spasm or a even a glitch with the machine. The second MRI showed that there was nothing to worry about.

I hope the testing goes well for you and your daughter.

Best,
Nakamova
 
Thanks everyone. I got a call from the neurologist today, who said the radiologist called. It isn't good news. They found a swelling in the pineal gland, which is deep in the brain. They are not sure if it's a tumor, cyst, fluid-filled sac or what. However, they had me make an appointment with the Children's Hospital hematology/oncology department so that sent me over the edge. I am a wreck, but working to keep it together for my kids. I am hoping for the best still. They said we would know more on Wednesday because the contrast would help determine if it's a tumor or not I guess. I'm not sure how to process all of this.
 
Gosh, I'm so sorry. I hope whatever it is turns out to be minor and easily treatable. Please keep us posted.
 
So very sorry to hear this. As Nakamova said keep us posted or if you just need to 'talk' the CWE community is here for you.

Mary
 
Sorry for your news. My 21month old had an MRI at 18months after having 4 clear EEG's, his 5th showed a slowing on the back of his right side of his brain. (he'd first been admitted to the ED with seizures at 7 months and was suppose to have an MRI then but had Bronchiolitis) Nureo decided something was not quite right so said just to be on the safe side ordered an MRI. He had a GA due to his age. When we went back to collect him we had an idea something was not right when they said they had to use contrast.
We got the results and our little man has a lesion in the middle of his brain on his putamen. That is why although he has events/seizures nothing was showing on his EEG's as it's to deep in his brain. The Nureologist said what sounds similar to what you were told, they are not sure what is is fluid, tumour or something affecting the lining of his brain. We are now in a wait and see period. Our Nureologist explained that unless his condition detoriates a lot that we just need to wait. He has another MRI in Jan, the day before his second birthday. If it has changed at all he said we will look at which path to take. If not more MRI's until he is 10 yrs old. He is currently on Tegretol to help his seizures. I will admit I had this horrible feeling of helplessness, why couldn't they tell me exactly what it was and it has taken me awhile to get my head around it, especially the waiting. I know when he has a bad day I keep thinking has what ever is in his head grown has it changed. But then in another way I feel lucky that his Nureo kept looking and has found this lesion as now they are monitoring him carefully as we had a Nureo in the past who had said he had clear EEG's so it all fine, a tumour etc would show on an EEG. Its so hard when they are this young and unable to tell you what is happening and for you to try and explain to them what is happening when they have tests etc.
Give your little daughter a big hug and this may sound silly but try not to let her condition run your life, she is still a toddler and I know with my little man we try and make sure he has as normal a toddler life as possible and the tests and Dr's appointments happen around the rest of his life.
Fingers crossed you get the same news or even better than we did and they just will want to monitor her.
Take Care.
Donna
 
Here is the latest. They did the second MRI yesterday, this time with contrast. The radiologist took us to a separate room to say that she has a tumor. It appears benign. They did some blood work before the mri to look for tumor markers for the scary tumors. We were sent to the neurosurgeon this morning. He said he could go in for a biopsy, remove the entire thing or wait another three months to do another scan to see if it grows. If the blood work comes back negative, he wants to wait for another scan. One of the two blood tests came back negative, so we are waiting.
The radiologist told us the tumor is the focus right now and is not related to the seizures. However, the mri also noted, and I'll probably mess this information up somehow, underdeveloped front, right lobe or something that is common in children with seizures. She said she wasn't going to focus on that though because that wasn't the most important finding. So, that's where we are. In many ways, I hate the idea that they are leaving it in her head even though I am thankful that she won't have to have surgery right now. Also, it is reassuring to hear the neurosurgeon say we can take a wait and see approach at this time. He also said he has successfully done this surgery many times in the last 20 years with no trouble. So, that's that. She has a 24-hour EEG scheduled for January 3, but now I don't know if they'll need to do that if they found some sort of sign to the seizures in her mri with the front lobe finding. Anyway, thanks for all the support. I am going to stick around and read some other posts. Maybe I can help others as you have helped me.
 
It's great that it's benign, and that you have some time absorb all this before taking any next steps.

I'm surprised that the seizures aren't related to the tumor (since seizures are a symptom of a pineal tumor). Out of curiosity, did the doc say how they could rule that connection out?
 
I am surprised they keep saying it too. I didn't press the neurosurgeon when he said absolutely not the cause, but I did ask the neurologist when she called if that was the cause of her seizures. She said probably not, but they don't know. With the brain though, they seem to not know so much that it's a weird coincidence.
 
Thats great news it is benign. They are unsure re my sons lesion if it is what is causing his as well they say they can not be sure. It is such a learning curve what you are going through and a whole lot of information to take in.
Take Care.
 
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