Brain Cysts & Agensis Coprus Callosum

**Loopy Linda** · 27-01-2008 22:58

Hi everyone,

i just wanted to put these disorders, disabilities , things out there to find out if others are affected as i would like to talk more. i did start a thread about them somewhere, but i can't even find my own thread so who else would be able to?

I will let you know i have an almost 5 month old boy. when he was born he had a large head due to large multiobulated arachnoid cyst, these resemble when you blow bubbles and they stick together. after a couple of days he had an ultrasound which showed problems and we were sent to childrens hospital for tests.

that night he had a MRI and it was decided to be best for him to have an operation the next morning to puncture his cysts and allow the CSF to drain into his head. the operation went well.

on the first and 2nd MRI ( this was 1 month after operation) it was noted agenesis corpus callosum. this means that the part of the brain which connects the two halves of the brain is either missing or not formed correctly.

we have another MRI for april to look into this further.

I would like to know is anyone has experienced either of these and would like ot talk, thanks

**Nowhere** · 28-01-2008 19:48

hey

just wanting to bump this thread for you thats all,
as you know miki has small cysts inher brain but i am next to useless as far as knowledge on the situation

just wanted to bump this back up to new posts

**Loopy Linda** · 18-04-2008 09:15

just thought i would update this thread a little with what i know about these brain issues and how they affect my son.

Gordy is now 7 1/2months old. i have just gotten results from his 3rd MRI.

He has a large cyst in his brain. it is still there and at this point it has stopped shrinking. i have to keep watch on him to make sure his head doesn't grow too fast as that will be first sign his cyst is growing again. at the moment even though it isn't shrinking anymore it isn't growing. and it is working with his brain so not causeing any troubles for him really.

He also had Agenesis Corpus Callosum. this is the partr of the brain that connects the two halves together and is the carrier of the information from one part to the other. his corpus callosum is missing the rear part and the front part is very thin. we are not real sure how this will affect him in long run, at the moment he is doing pretty good.

i think he is a little slower than most babies, he has no speech yet ( no mum or dad) and he isn't crawling or trying to yet. but he is rolling and can get around the lounge room so that is good.

again if anyone has any experiences with either of these they would like to share i would love to speak to you

Linda

**Loopy Linda** · 25-04-2008 22:37

Ok i have more to add.

I spoke to Gordy's nuerosurgeon a couple of days after our last visit as he hadn't personally seen the mri scans, he only had seen report when we had our visit.

Gordy's main cyst is as said before still quite large but working well with his brain so not a big worry at the moment. the worry is that there is a secondary cyst. this has been growing and it looks like Gordy will be having another operation.

the nuerosurgeon did say thiat while he is doing well developmentally he doesn't want to interfere with that but this secondary cyst will need further investigation. we will see nuero again in 3 months and if things are still going good for gordy we will go back on list for MRI and then after that decisions will be made about when to go back in there. if in meantime anything goes wrong we are to let him know straight away, he will most likely need op straight away.

so in reality we are looking at about 6/8 months time having another operation. i have known for about a week now, and really i am still shocked. i had almost forgotten about the cyst and put all my worrying into his ACC, now this is pretty much nothing to worry about, he will develop at his own rate as all babies do. it doesn't matter to us when he does stuff, we know in long run he will work it out. the hard thing is realising this is how my baby will spend his life. always worrying about the cyst mending and refilling, about another cyst forming, about another operation.

**SPC** · 25-04-2008 22:45

Hi. I looked after a baby with an absent corpus collosum some years ago. His main symptom was seizures, but it sounds like your bub is doing much better than he did. I know one of my friends has a friend in Melbourne who had a baby with ACC a few weeks ago, so I'll chase her down and see if she wants to chat about it.

**Loopy Linda** · 02-08-2008 20:09

well here is another update.

3 months have passed and we saw nuerosurgeon again. he is really impressed with my clever boy. his head size is going really well so it looks as though he won't be having a MRI for 12 months. this is great news as they won't operate again till after a MRI.

my boy is doing really well developmentally too. he is sitting, crawling, pulling to stand up and cruising the furniture. he can wave hello or good bye and has a funny little clap hands.

he still has no words so i am a little concerned, but maybe he has been putting all his energy into moving so it might come later. also there are some concerns with his hearing, we are going for further testing in a week and a half.

thats about it, we have lots of appointments and just about everything in hte world has become routine to test. we see physio therapists, pediatrician, nuerosurgeon and hearing specialists. we are to start in next month or so with opthamologist, therapy assessment and a nuerologist aswell. this will keep us informed of any problems and keep us ahead of trouble.

**mummyof5** · 03-08-2008 19:15

That is awesome, he is doing so well Linda. I hear you about the multiple therapies...it gets a tad annoying sometimes, but you do what you gotta do, don't you.
Am hanging out for Jock's MRI...6 weeks to go.

**QTB** · 03-08-2008 19:54

sorry iv only just seen this thread!

my oldest son has a cyst on his brain, its not a big one, the neurosurgeon we see said its halfway between small and medium sized. we didnt find out til he was 6months old when he had his first seizure in his cot when i was checking on him, we raced him to hospital in an ambo, they monitored him all night, he didnt have any more, so they sent us home saying it was "infantile seizires' and he would grow out of them. 3 days later he had a bigger one, again raced to hospital, we stayed overnight and they were about to send us home, again saying it was infantile seizures and he would grow out of them. we were just walking out of his room when he had another one, even bigger than the other two. thankfully a nurse was still with us and called the emergancy bell and they gave him meds to stop the seizure. it was then that they took me seriously, he was admitted and had hundreds of tests done, nothing out of the normal was found, so after 3 weeks, and getting him on tegretol to control the seizures we were sent home with an unoffical diognosis of epilepsy. we had to wait to have an MRI done as it had to be done at a different hospital. fiinally we got the MRI done and the results showed the cyst, which happened to be sitting in between two important parts of the brain, it was squashing those parts. which caused the epilepic symptoms. so his offical diognosis was a cyst on the brain causing epileptic symptoms. they didnt want to operate at that stage, they wanted to keep an eye on him with MRIs and his symptoms and see what the cyst did. we monitored it for a year, whilst still on tegretol. at his 19month MRI they found that the cyst was slightly bigger, but that was enough to move it slightly, so that it wasnt squashing the brain. he was trialled without tegretol, and didnt have a seizure!

hes now 2y9m and hasnt had one since. but due to the nature of his offical diognosis they are still checking him yearly (it was monthly, then bi monthly, then 6monthly and just gone to yearly) and they need it clear for 7 years before they can call him 'clear' of epilepsy (so that he can get a drivers license when hes old etc etc)

anyway, thats our story, so although no where near as hard a journey as yours, we got through it!

**Loopy Linda** · 30-09-2008 22:26

well another little update from me, this one is pretty good!

we have had a fair amount of testing recently.. and my boy just keeps amazing me. he has had hearing test - all good, eye test - all good, another development assessment - excellent.

everyday i thank my lucky stars that my boy can do so much.

he is almost 13 months, and not walking. but he can cruise along furniture at record speed, and he very very clever, figuring out little things.. like mummy always comes running when i find her handbag and start raiding it!

one thing i do put down to his ACC is his speech. i tend to say he is "screwy" and he is. when we went for last development assessment ( 12 months old) he still wasn't saying mum or dad, yet he says hedo (hello) and bath! while is assessment he says "kieran". see screwy i tell you! from the following day he was saying dad, the day after bub, and the third day after the assessment mum! all his words sort of come out with arr ending, marr, darr, barr, carr..but they will do me!

we will see his pediatrician again next week, he is going to be shocked and excited! i don't think he would have predicted my boy to be the way he is, and he is always excited to say how happy he is with his development. last time he was impressed with how well he help his head, or help eye contact. this time gordy is cruising, and talking.. i can't wait to see his reactions!