good news, bad news

[Guest guest]

I had at the children's hospital last week for a repeat sinus

CT. His last one showed complete blockage and chronic sinusitis. THey

thought they would be doing the sinus surgery this summer. Well this

one showed significant clearing and was MUCH improved. He said it

looked like what he would hope a post-op CT would look like! So that

is the good news.

The bad news is that they accidentially found a cyst on his brain. It

was a total accident that they found it. He asked if was having

headaches and I said yes, but I always thought it was either infected

sinuses or the IVIG side effects. I'm a little shocked because I've

never heard of this. My best friend has " revoked my internet

priveleges " so I don't try and diagnose this myself. The ENT surgeon

already consulted with peds neuro and they have ordered an MRI and a

consult with the neuro afterward. I'm trying not to freak out but

this is just so out there for me. Any advice or is anyone familiar

with cysts on the brain? Thanks guys. Janet

[Guest guest]

Macey has several little cysts throughout a certain place in her brain (can't

remember where). Plus she has some demylinization of brain matter. She's always

been prone to migraines and she also has the DI but her endocrine and immuno say

neither can be related to the cysts. They've just left them there and we do a

new MRI about every 5 years or so.

Ursula - mom to (14) and Macey (12, CVID)

http://www.primaryimmune.org

http://www.jmfworld.org

http://caringbridge.org/ga/macey/

[Guest guest]

That's interesting, because a few weeks ago I posted how the GI doc

thought he had abdominal migraines. He was waking up in the

morning with headaches and Intense vomiting that we couldnt' get

under control, usually around 4 or 5am. Now I'm wondering if there

was a neurological connection to it. However the specialist called

back today and said his MRI was scheduled for July 6. We're hoping

it's that far away because they don't think it's urgent. Is that

hopeful thinking or is that typical to schedule things that far out?

thanks for all your support. I had my weeping yesterday and I'm

just determined to wait until july 6th. Janet

>

> My son, Trayvon, has a subarachnoid cyst that was also found as

an

> incidental finding when looking for craniostenosis. I was told

that about 30% of the

> normal population has these cysts and have no issues with them.

However a

> small proportion experiences some growth of these cysts which

begin to cause

> issues. I do know that none of my other children have this cyst

(and they've

> all had head MRI's for one reason or another) and he's the only

one with

> migraines. As a matter of fact, he had his first migraine just 2

weeks after

> learning of this diagnosis. We haven't had a repeat MRI because

they said that

> an occasional migraine is not indicative of increased

intercranial pressure

> due to the lesion. The level of concern would only rise IF he

had persistent

> headache, headaches upon awakening in the morning, unprovoked

vomiting or

> other signs of neuro issues.

>

> Just thought I'd share our personal experience with cysts.

>

> I'll pray that this is nothing more that an " incidental finding

with no

> signifigance. "

>

>

>

>

> Mommy to Annette, specific antibody deficiency and Subclass IGG 2

adn 4

> deficient. IVIG x 4 years, Sub Q IG x 2.5 months and LOVES it.

>

> pervious T and B cell abnormalities and antibody

deficiency. IVIG x

> 18 months. He had a complete recovery of function at the 6 months

post IVIG

> trial. In the process of retesting all of his immunizations for

the 3rd time to

> see if he held them this time. Currently getting IVIG for

autoimmune related

> epilepsy.

>

> Mommy to 3 other beautiful and complicated children as well. LOL

>

> _www.caringbridge.com/ny/my2angels_

> (http://www.caringbridge.com/ny/my2angels)

>

>

>

>

> ************************************** See what's free at

http://www.aol.com.

>

>

>