Brain cysts

[Foogirl]

We got the news that Abby's last brain scan had shown there are some cysts. They are in the grey matter and not in the ventricles, which means they are less of a worry, but obviously we are still a bit shell shocked about it.

No-one seems able (or willing...?) to give much information on the "what if" scenarios.

Anyone else dealing with this sort of thing?

 

[Mumof42009]

Hi
First of all sending you
My dd never had cysts but had a small bleed on her brain i was so worried at the time but it corrected itself. Did they say anything about operating? They dont seem to like operating when they are so small, i know its a big worry for you hun but she will be just fine these prems are little fighters.
Forgot to add make sure you ask loads of questions and demand answers also a good website i found a lifesaver is bliss have look you might find someone with same experience.

 

[xtashax26]

aw hun i dont have any advise but i wanted to give you some keep on at them for more information i hate it when they dont explain things to us probley.

 

[Samantha]

Hi,
Our little girl who was born at 24+5 in July 07 also had cysts form on the brain. The brain is just so complex that I guess it's difficult for any doctor to really say what the future holds. however, what I can tell you is what is happening with our little girl. She is now nearly 2 years and is doing fantastic. She does have moderate hearing loss and wears hearing aids and she does have a mild form of cerebral palsy. But dont let this scare you, she is now crawling and we fully expect her to walk by the end of the year. She is the happiest baby, very bright and alert and attends full time nursery which she loves.
It is such a scary time when you hear news like that. I remember just how scared we were, the only advice I can give is to just enjoy your baby and try not to worry too much.
If you want to read about our little girl then her website is www.charlottelow.com

All the best
Sam

 

[Foogirl]

Samantha, thanks for the message. You are absolutely right about enjoying her, we're trying hard to do that.

I love the site you have, it is always great to have a diary to look back on and nice to share a story in that way.

Can I ask, where about in Charlotte's brain the cysts are?

Thanks again.

 

[Samantha]

Hi,
Charlotte's cycsts were not in the ventricles either but were dotted around her entire brain. Charlotte also suffered water on the brain when she was a few months old which caused a swelling of the ventricles. It could be the cysts or the water on the brain or a combination of both which caused her mild cerebral palsy.

I remember how hard it was in those early first months, I would cry so much and I would wonder how on earth I was going to cope with what seemed like bad news after bad news. Now, as we approach Charlottes 2nd birthday that pain has been replaced by complete joy. Just try and cope as best you can as things do get better

xx

 

[JadeyB]

Hi foogirl,

I was just doing a google search, naughty I know, and came across your thread.

Sorry to bring this topic up again, I hope that's ok, but I just wonder if you know anymore more about it? I think this is what we have been told for Hermione. Like you, we are not getting anything in plain English!

The last chat with the consultant wen well and he doesn't think it's anything to worry about, but cannot say or sure until she as future scans. Xxx

 

[bumpsmum]

must have missed this first time around but just wanted to add that a year and a half later u only need to watch one of your wee videos of crawl watch to see how well she overcome and adapted to her cerabal palsy she is soooooo smart and articulate and such a wee comic I could just spread her on a piece! hopefully the cysts are clearly another barrier she has as will continue to push through! x