Porencephalic cyst
 

I am 26, and have a porencephalic cyst in place of my entire Right frontal lobe. I have horrible headaches daily. I have visual disturbances, disorientation, short term memory loss, and extreme photosensitivity as well.
I had a subarachnoid hematoma, and seized shortly after birth. Forceps used during delivery were thought to be the cause. I was on Phenobarbitol for six months. However, my cyst was only diagnosed last year.
Does anyone else have this issue? I do not have any issues with mental delay or paralysis. I just want to know if anyone else has insight into treatment and/or prognosis. I feel like I am drowning, and no one knows how to save me. I am the mother of two girls. I want to be able to have a life with them.

[QUOTE=gammillgirl07;663166]I am 26, and have a porencephalic cyst in place of my entire Right frontal lobe. I have horrible headaches daily. I have visual disturbances, disorientation, short term memory loss, and extreme photosensitivity as well.
I had a subarachnoid hematomia, and seized shortly after birth. Forceps used during delivery were thought to be the cause. I was on Phenobarbitol for six months. However, my cyst was only diagnosed last year.
Does anyone else have this issue? I do not have any issues with mental delay or paralysis. I just want to know if anyone else has insight into treatment and/or prognosis. I feel like I am drowning, and no one knows how to save me. I am the mother of two girls. I want to be able to have a life with them...


:) I too have been diagnosed with this condition in a letter today from neurologist...new diagnosis....I always knew something was wrong in my head.. Had vomiting migraines as a child..Found a way to cure then as a young woman, with coffee, aspirin and some sugar, before headache got too worse..always had pressure in head and visual disturbances..at age 50, I blacked out with seizing during blood sugar test...Blood pressure was sky high 180 over 120, was frequent most of my life...may have had a mini stroke in my 20's when I had a severe headache and unintelligible speech one day..my little child kept laughing at me. so I came out of it next day...eventually I was put on blood pressure meds...but its still goes up...many meds later...I finally was ordered up for cat scan, and a large arachnoid cyst was found...at 62, it doubled in size 2 yrs ago...Its now 6.2x 2.6x3.4 cm. I just got a letter this morning from neurologist, in Corpus Christi, I've now been diagnosed with a porencephalic area in right frontal lobe...need to find out what that means.....I am so sorry, I understand exactly what your feeling.... worked in a health office for 20 years in a school...with high ratings...was also born with defective heart, atrial septal aneurism, and bladder problems....we must keep on trying,,meditating helps and practicing deep breathing and avoiding getting angry is very important... I love to swim, and enjoy lots of friends...keeping busy, and asking for help, because all they want to do is give me lots of meds, including inhalers...no surgery....
Always there will be an answer for us someday....
:)

Your symptoms sound very a like to traumatic brain injury because it is dealing with your frontal lobe.There is a forum for TBI on here.You might want to come there and post people are very helpful and can relate.:grouphug: