arachnoid cyst /shunt
 

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! :Wave-Hello: 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

Hi 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.

shunt
 

Hey
ive had a vp shunt fitted to drain my arachnoid cyst since 14 months old, I had this revised at 4 years old i am now 16... and had it revised 2 weeks ago.

but ive never had any problems with my life, yeh i may get more than the common headache, but thats expected...

i am VERY sporty, i do every sport possible, i am advised not to do heavy sports but i do anyway as the cyst and the shunt dont effect my physical ability to do anything.

=D send my love to your daughter xx

Mick, I was wondering....when reviewing the many MRI scans that you've had to take, did your DR ever tell you that your brain "has fallen slightly" into the brain stem? My son has the same story as yours, except he is only 10 now...so 1 shunt, 1 revision, and 5 years of good life. Thanks to God and a great DR. But this is what I am dealing with right now..The doc says its not a big deal, not to worry. But that we will keep an eye....

Arachnoid cyst
 

I also discovered at age 30 that I had a posterior fossa arachnoid cyst about the size of a gulf ball. As a child the only symtoms I had were learning difficulties, writers cramp, depression, heat exersion migraines, and terrible ear pain. As I became an adult I suffered at the age of 21 with facial palsy, and over the years my depression grew, my ability to concentrate became more and more difficult, still had horrible migraines, fits of anger, cervical stenosis (surgery in 90). In the past 2 yrs I have been diagnosed with dystonia, mieniers disease, tremors, partial epilepsy. Yet the do not connect anything to this arachnoid cyst: it is the size of a golf ball, and has not grown since they found it?? It seems crazy to me that it is not related to at least some of my neuro deficits??? any thoughts would be appreciated. many thanks---hutch:confused:

Hi, ive posted on her before but since i think ive had plenty done.
Including a shunt conversion to a VA shunt from VP (in february)
Then had a shunt malfunction in June, so had an externla shun fitted over a weekend, then had my shunt removed completely and was given a craniotomy and fenestration of my arachnoid cyst (right frontal/temporal middle fossa) but this failed after three weeks of excruiating headaches.
So was put on an external shunt for 6 days in July, and then had my VA shunt put in.

Now on oral antibiotics to treat a suspected wound infection on the head incision. Blah.

After my craniotomy, i did experience a few seizures, the first ive ever had, but havent experienced them since. :)

Good luck