Parencephalic Cyst

[Paul D.]

Our grandson at nine day old had 2 head bleeds. Then he started with infantile seisures. Recently at the Primary Childrens Hospital Dr.s tried to drain one of the two cyst in his head. It was not successful.  We are looking for any information about Parencephalic Cyst.  Maybe other people who have had a similar experience.  What are these cyst? Can they be taken out?  Is brain damage always part of the result of this type of cyst? What is the best way to treat this type of cyst? Gavin has been on all type of meds but none have controlled his seisures. Gavin is 16 months. Since his surgery he can't stand to be moved. Cries and moans, where he use to be such a happy little one.
The Dr.s have told us they don't want to put in a shunt because he is so little.  They do plan 1 or 2 more surgeries. We're assuming the same type.

[CCF-Neuro-M.D.-JT]

Very sorry to hear about your grandson. I think that what you may be trying to say is pOrencephalic cyst. This is an abnormal cyst or cavity within the brain that is filled with cerebrospinal fluid (CSF) and is connected with the ventricles of the brain. Ventricles are normal spaces within the brain that we all have which hold our CSF. Porencephalic cysts are thought to be caused by either trauma in later life or stroke in a developing fetus. Clinically it has been associated with vision and eye problems as well as seizures and mental retardation. Other neurological symptoms/signs have also been seen with these cysts. Some surgeons will drain the cyst which have provided some improvement in the patient's symptoms. There are special procedure and navigation systems that the surgeons use to minimize any brain damage when they go into the brain. A shunt is a more continuous way to drain the cyst, but this decision should be left up to the surgeons. You could always seek a second opinion regarding this matter.  It's going to be a rough road for little Gavin in the days ahead. I wish you and your family all the best.

[foradam]

Hi I feel for your little grandson and his parents. I don't understand why the doctors say he is too little to have a shunt put in. My son, who is now 21, had a shunt put in at age 6 months and I have heard they can even put then in while still in the mothers womb. Sorry I have never heard of Parencephalic Cysts. Our son had porencephly, archnoid cysts, and parcial corpus colosum. He did suffer brain damage but if you met him you would never know it. I hope the very best for your grandsons future.

[Paul D.]

We really appreciate your response concerning our son. We have very little information about porencephalic cysts and have never met anyone who has heard of them. We would love to hear more about your son and what he has gone through. Do you know what caused your son's cysts? Did the doctors tell you if it was rare or a normal occurance? Did this affect developmental milestones, such as crawling and walking? If so what kinds of things did you do to help him achive these goals and when did he acomplish them? (Gavin is 16 months old and can only roll over occasinally). In what other ways if any have the cysts affected him? Did or does your son have seizures? If so what things have you found worked or didn't work for them? Is your son now able to lead an independant life? Did you try other things before having the shunt put in? How has a shunt worked for your son? (We havn't heard very good things about them). I realize we have given you quite a few questions to answer, but from one parent to another we would really appreciate any information you are willing to share! Thank you for you time,  Gavin's Mom and Dad.

[foradam]

You are right there is very little information on porencephaly. I know very little myself. Our son had to have a shunt put in because they said the pockets in his brain were getting larger and the fluid was taking up brain tissue space and to stop this the shunt had to be put in to drain the fluid. He has done very well with having a shunt, only needing it replaced when he was 7yrs old and then again at age 20yrs but having complications and having to have it done again 2 weeks later. Any time his shunt stops working he can and has suffered more brain damage. The doctor 21 yrs ago said he had probably suffered a birth injury but now I'm not so sure. I recently read all his med. records and the radiologist says he also has archnoid cysts (which sounds very much like porencephaly) and parcial corpus colosum. The corpus colosum is formed in the first three months of pregancy so now I'm not sure about the possible birth injury. From what I have read porencephaly is extremley rare. I too have never heard of anyone else having it. Looking at his CT scan he has probably about 1/2 the brain mass a normal person would have. Just before his first surgery as an infant the doctor told us he couldn't see how he was even moving the left side of his body. We asked if he would be mentally retarded and the doctor said he couldn't answer that. He was slower at crawling (14mths) and walking (15mths) than my other children and has always had a learning disability. With lots of help he did graduate from high school. Like I said if you met him you would never know. But he does have major problems with different things. He has now developed blood clots and the one in his sagital sinus caused him to have a seizure. Never before had he ever had a seizure. I read on the NINDS web site that they are doing a study of children with porencephaly and blood clotting which leads me to believe that his brain disorder has something to do with his blood clots. I hope I have addressed some of your questions, of course there is lots I could tell you. But I tried to keep it simple. Best of Luck!

[mamafigure]

Hi, I am very sorry about your grandson.  I have had a lot of experience with Primary Children's and none of it was good, except for two doctors and one nurse.  I ended up calling Children's Hopital in Philadelphia, because it is highly recommended, and asked for a recommendation.  I ended up going to Oakland in California.  At the time, my daughter was three months old and weighed 5 pounds.
Good luck to you.

[kmurchie]

Hello, I would like to relate my brothers story to you if it is of interest. He has a porencephalic cyst from birth and is now 39 years old. He lives a relatively normal life and has undergone a few operations over the years including a shunt 10 years ago. If you need to talk to me further please email me at ***@****. I don't know if it will help but sometimes it is better to share the knoweledge to lighten the load, regards, kylie.