Discussions By Condition: Brain conditions

Porencetalic cysts

Posted In: Brain conditions 4 Replies
  • Posted By: Anonymous
  • October 18, 2006
  • 04:00 PM

Does anyone know of someone with this? A person I met a few years ago has been diognosed with this, and almost all the info i can find about it says most people with this die before they are 20. This person I know is past 30 years old. They can are having trouble finding any studies on patients this age so no one knows for sure what to expect to happen. Any one have info on this rare disease.

Thanks.

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  • Does anyone know of someone with this? A person I met a few years ago has been diognosed with this, and almost all the info i can find about it says most people with this die before they are 20. This person I know is past 30 years old. They can are having trouble finding any studies on patients this age so no one knows for sure what to expect to happen. Any one have info on this rare disease.Thanks.I was 36 years old when the doctors found that I had a porencephaly cyst in the middle of my brain. I had a MRA which then led to spinal taps and other tests being run to rule out MS. This disease is rare and is also known as "A hole in the brain." This can be caused by sinus infections to other infection-I grew up with having sinus infections and bronchitis non stop. This is not life threatening and is different from children being born with this condition. You can also have this if you have ever had head trauma. I still have alot of headaches that make me feel as if something serious is going on. I have little cyst that surround the larger cyst and the doctor only asked for a MRA/MRI twice a year to make sure that the tissue that is destroyed from cyst that cause the holes in the brain are not close to nerves. Your tissue will heal-but it's bad enough knowing I have a cyst that sits in the middle of my brain. I know that it is hard to find info on this disease-everything I came across before seeing the specialist scared me to death and was mostly relating to children. If your friend has had a pretty normal life up to now-don't worry-this is not a cyst that can rupture and they shouldn't stop doing things they enjoy.
    Anonymous 42789 Replies
    • February 6, 2007
    • 03:02 AM
    • 0
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  • Does anyone know of someone with this? A person I met a few years ago has been diognosed with this, and almost all the info i can find about it says most people with this die before they are 20. This person I know is past 30 years old. They can are having trouble finding any studies on patients this age so no one knows for sure what to expect to happen. Any one have info on this rare disease.Thanks.The prognosis for individuals with porencephaly varies according to the location and extent of the lesion. Some patients with this disorder may develop only minor neurological problems and have normal intelligence, while others may be severely disabled.
    Anonymous 42789 Replies
    • February 6, 2007
    • 03:17 AM
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  • A porencephalic cyst develops due to a prior brain insult. These are often congenital. This kind of cyst does NOT produce symptoms that are progressive. A child who sustains a brain insult and develops a cyst may have neurological problems or may be fine. When a porencephalic cyst is found in an asympomatic adult, there is usually no need for worry.
    Anonymous 42789 Replies
    • February 6, 2007
    • 02:21 PM
    • 0
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  • I have a porencephalic cyst which just happened to have been found when having an ct scan done for my hydrocephlus. I have not always had one....so I'm thinking I either got it from a west nile encephalitis infection, which I likely had about 15 years ago, or by having my shunt (for my hydrocephalus) overdrain for so many years that it just created this cavity. I could be wrong. I do know that the cyst is communicating with my ventricles, so that now, instead of placing the shunt in my ventricles (which are not paper-thin from overdrainage & virtually impossible to get a catheter into), they drain the shunt form my porencephalic cyst.I have had no side effects or issues from this cyst...except that now I don't have to deal with overdrainage headache...which is great!!!anyway, people with porencephalic cysts have the same life span & quality of life as anyone else...so long as there isn't any other more serious underlying condition that caused the cyst in the first place.It is rare, so studies on treatment & even just case studies are few and far between.Your friend will be fine. I do suggest that if someone is still getting headaches and has a porencephalic cyst, that they get their incranial pressure (ICP) check-ed...usually by spinal tap, to figure out if there is an underlying hydrocephalus.
    Anonymous 42789 Replies
    • December 16, 2009
    • 07:21 AM
    • 0
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