My 4 year old has an 8mm cavernoma on his right frontal lobe

[Logansmommy]

Hi everyone, I'm A scared mommy of a 4 year old who's mri came back with a cavernoma. We believe he had a slight seizure of slurred speech but now I'm rethinking other symptoms he might have had that I shrugged off. Balanced problems, numb cheeks? It's all hard to know since he most likely couldn't communicate it to me. I've never been so terrified and I'm not sure what to do. Surgery sounds so scary but he had the rest of his life to live and I wouldn't want him limited if it can be removed. How frequent do these episodes start to become if we forego surgery ? Any advice is welcome. Thank you,

Logansmommy

[julebee]

Hi,my history is that i had my first when i was 12 yrs, then 16 (but undiagnosed...drs thought i had bells palsy because of facial paralysis that rectified itself after a couple of weeks each time. Then had bigger bleed when I was 20 yrs...had neurosurgery and had it clamped off. Now at 47 i have had more micro bleeds and they have discovered via MRI that i have another cavernoma in pons of brain. So they have recommended I have future MRI's and if cavernoma changes lots then surgery may be only option but they would rather not. So ....my thinking...after networking with others... there is no rhyme, reason, or pattern...which makes decision making really tough!!! My advice is get yourself a really good neurologist and ask lots of questions, weigh up the pros and cons and then make the best decision you can for your little boy...Logan. I think as an "owner" of cavernomas...I am an advocate for "quality of life" so make sure you ask lots of questions in regards to this. All the best, I hope you find an amazing neurologist who can support you through this...Julie

[Logansmommy in reply to julebee]

Thank you so much for your reply! He has his whole life ahead of him and I just want him to have the surgery but I really need to know the risks. Was there anything they told you before surgery ? Why didn't they see the other cavernoma ?

[julebee in reply to Logansmommy]

Yes, even though it was 27 years ago I remember clearly that the neurosurgeon (one of the best in Australia but NO bedside manner) said that there were 3 possible outcomes...1 = not coming out of the operation, 2= right side body paralysis, 3 = best outcome, left side facial paralysis...I was lucky and got number 3!! They don't think that cavernoma was there at the time and that it has developed since, but they are not 100% certain as technology wasn't as good as it is now.

All the very best, hope things work out well for your little man

[Klara123]

Hi, I am in my late forties and have recently been diagnosed with a cavernoma that they believe I was born with. I had one seizure when I was about 8 which at that time they thought was epilepsy. I had no further seizures until recently and I have had virtually no symptoms other than slight balance problems. I have led a full and happy life for many years even with a cavernoma. I have had my second seizure in the last few months and do have issues with impaired speech and a numb right leg from time to time but not significant enough that I would consider an operation and the symptoms have always got better quite quickly. I have adopted the approach to have the cavernoma monitored through regular MRIs and only if my neurosurgeon tells me I have to have an operation due to increased risks would I consider it. I guess what I am trying to say is that it is possible to have a normal life with a cavernoma and whilst my instant reaction to my diagnosis was 'I want to have this removed' I quickly realised that I have had this all of my life and it is worth waiting and monitoring before making a decision on surgery which carries it own risks too. Your son is very young and I hope like me, his episode could be a one off and that his life will be unaffected significantly for many years to come. I am also a mother and understand how terribly worried you must be and send my best wishes to you and your son.

[GemmaMillie]

Hi I've just been searching Cavernomas and came across your message. I just thought I would tell you our story although surgery was taken out of our hands...

February last year my partner came home from work not feeling very well, blurred vision (which looking back he had had for months) tingling feet and hands and face and generally feeling unwell, we went to A & E who were going to send us home with a viral infection but at the last minute they decided to do a CT scan, which came back that he had had a bleed (stroke).

He was admitted to the stroke ward but progressively got worse over the next few weeks, we waited another week for an MRI scan which came back with a Cavernoma in the Brain stem which had burst and was causing the stroke and these symptoms. At this point he had limited use in his right arm and leg, he couldn't walk, he couldn't see, couldn't hear, go to the toilet, he couldn't sit up, was feeling dizzy and sick, his body was shutting down.

They did emergency surgery within 2 days of the MRI to remove the cavernoma, there were very high risks as it was deep in the brainstem, but we had no choice and didn't know how it would turn out and didn't know what medical issue she would be left with.

When he came out of the operation he could see again, hear again, the sickness had gone, but he was paralysed down his right side. We were devastated, it felt like our lives changed.

A year on and through determination he is walking again, albeit with a stick, but unforntunately his arm and hand will not return. We are learning to adapt and we do, he has just started to drive again and has had a car adapted and we have set up a new mobility business, we have been abroad on holiday and are going again in July.

So life can carry on and whatever the outcome for your little boy he/you will adjust. At least you have found out now and can deal with it early. We knew nothing about Cavernoma until Colin was 47 and going to A &E that day to having surgery it was 4 weeks.

Please let me know how you and your little boy are getting on and fingers crossed it all goes well for him x

[NancyBotello]

HI there is a support group on Facebook that might be very helpful to you.

facebook.com/groups/2096835...

Here if the link if you are interested. I myself have a 2, soon to be 3, year old with cavernomas. He underwent surgery in July of last year.