I am gathering info to help a four year old who had arachnoid cyst fenestration at 1 yr., burr holes at 2 yrs., shunt at 3yrs. I want to know what deficits she may encounter, what to anticipate her needs will be. I want to know from someone who has been there. Thanking you in advance . .

To irisheyes71,
My arachnoid cyst was discovered at the age of five after a lose of balance and other symptoms at which time i had a shunt put in and it's been in now for 25 years. In this time i have had next to no trouble or effects from this op. or condition....My shunt was lenghtined at the age of 12 and so far created no problems. I have lived a normal life and been involved in many sports etc. that may have tested the shunt & cyst. I have been to the doctors on some occasion's due to headache's and some minor symptoms to be told all is well. This is my experience with the condition and i can't say if it is consistant with other peoples experience, but hopefully the young lady in question has a full and enjoyable life. All the Best

Oh, thank you so much for your response, it means there is much real life hope for her. They tell me she has developmental delays and anger issues, did you have any visual problems as well?

I can't really help you in regards of what to expect with babies/children being diagnosed with an arachnoid cyst, because my cyst wasn't discovered until I was an adult.
I did have some learning difficulties and co-ordination/balance problems in my early years, but in those days (40+ years ago) they didn't know the cause of them. But when my cyst was discovered (with MRI) I was also diagnosed with Dandy-Walker Syndrome (a mild variant). I had fenestration, and never shunted, so I don't know what problems could occur there. Does this child just have a cyst, or do they have Dandy-Walker or Chiari malformation as well? They are usually associated with learning delays and co-ordination/balance problems...

Unfortunately I'm unable to provide you with any answers irisheyes71, but I did want to take this opportunity to welcome you to NeuroTalk.

Do check out some of the other forums around the board, and maybe we'll meet up again.

It's good to have you with us, but I'm sorry for the reason that brings you here.

Hi, Irisheyes! Welcome to NeuroTalk!

Brad can I ask you a few q's please? Where was your cyst located? Was it small or large? Can you describe the problems you experienced with regards to your balance? The reason I am asking is I have an arachnoid cyst in the front left of my brain and just in the last few weeks have had a shunt placed inside the cyst as I am experiencing great difficulty with my balance but I am yet to see an improvement. Thanks v much

Hi irisheyes71,

On the issue of development delays and visual problems i had none of either so i can't really comment on those, on the anger issues, it is until recently on researching more about my condition that i have heard about apparent anger issues which can be a side affect....This may well answer some of the issues i had with my temper when i was younger, from about the time i had my shunt inserted at age 5 until about age 12 i did have some issues with anger....my parents and myslef were to believe this to be age/circumstance related as we moved alot and i went to alot of different schools...but as ive now relised it could well of been a side effect of the cyst/shunt, but to be honest i'm not totally confinced it was?? If it was the case all i can offer is that i did grow out of it and i didnt cause myself or parents to much grief....just the occasional outburst...Sorry i cant offer anymore than that, but i am still researching mood/personality effects of the condition...if any.
, Best wish's Brad

Hi Mick,
My cyst is located on the left side of my brain, i honestly can't tell you if my cyst is small or large, but being that my balance issue was the cause of my cyst being discovered and it got to a size that it was effecting my motor skills i would imagine it was large. My memory of my balance issue's are vague as it was 20 odd years ago, but i do remember it started with falling over at school and being sent home and from then on it quickly got worse, within a few days i was unable to stand on my own and was very sick. After many visit's back and forth to the Dr's i was diagnosed with an arachnoid cyst and within 1 month had my shunt inserted. After the operation i was in a wheel chair for a couple of months and from that point on, i've had no other balance related symptoms. Not sure if this helps much,but it's all i can remember concerning my balance issues. Hopefully you will see some improvement in the near future, my best wish's to you, Brad

I appreciate your response immensely. My cyst is also on the left side of my brain and is large. The first dr's i seen just dismissed this as the cause, saying balance is at the back of the brain not the front however as you have mentioned yourself I discovered that motor skills and sense of space is co ordinated at the front in the left temporal lobe. I had a shunt placed inside my cyst about 5 weeks ago and the vomiting has reduced slightly but I am still vomiting 2 or 3 times a day, my balance is so disabling I can hardly walk or stand on my own. The cyst is about the size of an orange. I am back to see the surgeon in 2 weeks. From what you say about it taking 2 months I may have to wait a number of weeks or months before It does it's job, i hope this is the case as I do not want to progress to having the op where they remove most of the cyst.