OT pineal cyst

[Guest guest]

I’m sorry, this is probably the

wrong place to post this, but I’m looking everywhere I can for people who have

experience with pineal cysts, or any advice/opinions of where to turn….

Has anyone heard of a pineal cyst or have experience with

them? We were told my daughter has migraine and seizures but I seriously

question the seizure part of this diagnosis. We’re interested in

neurofeedback as it helps both migraines and seizures. Then we were told

she has a pineal cyst on the brain stem, 7mm. After freaking out and then

reading about it, now I’m questioning if neurofeedback will even help since the

cysts cause migraines and seizures.

My biggest issue now is getting doctors to believe her

symptoms are caused by the cyst. They insist that the cysts cause no symptoms

but there are a TON of people on the web who have all the same symptoms as my

daughter and all have the cysts. It’s FRUSTRATING. We’re working

with Boston’s Children’s and I believe they’re one of the best hospitals out

there yet they don’t think ANY of her symptoms are caused from the cyst.

Symptoms are: migraine, seizure, visual disturbances (possibly aura and

aura can be seizure OR migraine), dizziness, sudden onset severe nausa and

headache that lasts 10 – 20 minutes, SEVERE pain when hit head – pain lasted 3

hours, Motrin didn’t help. I always ask for the level of nausea or pain

on a scale of 1 – 10. The nausea is a 7 and headache a 5, the pain after

hitting head a 10. Also, when she had a fever she awoke out of a sound

sleep holding her head and letting out the most pitiful wail I’ve ever heard.

Pain lasted only seconds to a minute. Once she sat up it went

away. I question if there was a blockage of the cerebral fluid as the

cysts cause hydrocephalus.

Sorry for listing so much, I don’t know where to turn. In the past month

she’s had 11 “episodes” and when I called the dr. he said it didn’t sound

seizure related. Although the sudden onset headache and nausea started

before she hit her head while playing, the pain afterward the doctor attributed

to a head injury. I’M CERTAIN THIS IS NOT THE CASE. The

pediatrician attributed the severe pain the other nights to a fever. THIS

HAS NEVER HAPPENED.

We’re hoping Dana Farber/Brigham Women’s will take on our case but it seems

that doctors just don’t give any attention to pineal cysts unless they

grow. We don’t know where to turn from here.

Opinions and advice greatly appreciated.

[Guest guest]

,

I belong to a couple yahoo groups for brain tumors and they're full of

knowledgeable parents with lots of experience. I wonder if you could

find one for pineal or other brain cysts and join. The members on my

lists are very encouraging. They are big on recommending 2nd, 3rd or

even more opinions if necessary. Dana Farber is one place I've heard

people have had good experiences with.

Everyone has different experiences of course, but it helps to know who

had what problem and which hospital had help. They will often send

their brain scans to hospitals around the country and docs will

sometimes give opinions without your needing to travel.

About neurofeedback, I can only remark that it has helped my son

(behaviors, not seizures)who has a brain tumor and it has been worth

it, but it's not as simple as a brain without a long term

aggravation. Craniosacral can help with headache, but I think your

idea of hydrocephalus is worth exploring. The docs recognize the

headache after lying down, better after being up as a typical sign.

Best to you in finding your help,

Rah

>

> I'm sorry, this is probably the wrong place to post this, but I'm

looking

> everywhere I can for people who have experience with pineal cysts,

or any

> advice/opinions of where to turn..

>

[Guest guest]

,

Wouldn't want to question your doctors, but the Wikipedia entry for Pineal Gland Cysts, which references the American Journal of Neuroradiology 28:1706-1709, October 2007 includes:

" it is rare for a pineal cyst to cause symptoms. If they do, these would most likely be headache, visual disturbances, or hydrocephalus "

Pete

I'm sorry, this is probably the wrong place to post this, but I'm looking everywhere I can for people who have experience with pineal cysts, or any advice/opinions of where to turn….

Has anyone heard of a pineal cyst or have experience with them? We were told my daughter has migraine and seizures but I seriously question the seizure part of this diagnosis. We're interested in neurofeedback as it helps both migraines and seizures. Then we were told she has a pineal cyst on the brain stem, 7mm. After freaking out and then reading about it, now I'm questioning if neurofeedback will even help since the cysts cause migraines and seizures.

My biggest issue now is getting doctors to believe her symptoms are caused by the cyst. They insist that the cysts cause no symptoms but there are a TON of people on the web who have all the same symptoms as my daughter and all have the cysts. It's FRUSTRATING. We're working with Boston's Children's and I believe they're one of the best hospitals out there yet they don't think ANY of her symptoms are caused from the cyst.

Symptoms are: migraine, seizure, visual disturbances (possibly aura and aura can be seizure OR migraine), dizziness, sudden onset severe nausa and headache that lasts 10 – 20 minutes, SEVERE pain when hit head – pain lasted 3 hours, Motrin didn't help. I always ask for the level of nausea or pain on a scale of 1 – 10. The nausea is a 7 and headache a 5, the pain after hitting head a 10. Also, when she had a fever she awoke out of a sound sleep holding her head and letting out the most pitiful wail I've ever heard. Pain lasted only seconds to a minute. Once she sat up it went away. I question if there was a blockage of the cerebral fluid as the cysts cause hydrocephalus.

Sorry for listing so much, I don't know where to turn. In the past month she's had 11 "episodes" and when I called the dr. he said it didn't sound seizure related. Although the sudden onset headache and nausea started before she hit her head while playing, the pain afterward the doctor attributed to a head injury. I'M CERTAIN THIS IS NOT THE CASE. The pediatrician attributed the severe pain the other nights to a fever. THIS HAS NEVER HAPPENED.

We're hoping Dana Farber/Brigham Women's will take on our case but it seems that doctors just don't give any attention to pineal cysts unless they grow. We don't know where to turn from here.Opinions and advice greatly appreciated.

-- Van Deusenpvdtlc@...

http://www.brain-trainer.com305/433-3160The Learning Curve, Inc.