Name: tonix Title: porencephalic cyst

does any1 out there have a child with this problem. my 7 m.o has it but i have not been able to find anyone to talk to in the same sitguation  ?

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Name: ajlanders • Date: 07/20/2006 11:40:44

My nephew has recently been diagnosed with the same problem. Like you I haven't been able to find out a lot about it. It is very unsettling.  =

Name: Michelle • Date: 10/06/2006 22:10:46

Yes my daughter is now 16 years old and we discovered she had a porencephalic cyst when she was 8 months old. I am willing to discuss all issued with you on how we have coped and still coping as she grows older.

Regards
Michelle  =

Name: RUDGE • Date: 11/01/2006 04:16:39

My child had a brain haemorrhage prior to birth which ha left her with a porencephalic cyst.Although she has a weakness down her right side she is now 11 and enjoying life as a 'stroppy teenager!'
Chrissie  =

Name: Vickie • Date: 12/21/2006 00:02:19

Wow- I can't believe how many people out there actually are going through this and yet there is so little information. My husband was diagnosed with a porencephalic cyst at the age of 40. He was thought to have ADHD most of his life, so he never had a seizure,or blood clot, but has anger outbreaks, shorter memory span, and things that most people wouldn't see unless you live with him or are very close to him. Our marriage was almost over. A counselor noticed his aggressive behavior and the loss of connection from what was being said and stated that this was not normal. An MRI revealed that his cyst was occupying over 30% of his brain. All other tests were normal. So I really don't know how necessary it is to have any type of surgery done. We were told by many surgeons that this would cause more harm then good. We were also told that he was developed this way. My husband is a very good athlete and actually very smart. He is on a medication to help his brain from racing so much when someone is talking to him. Everyone has noticed a huge diiference in him. We have tried to call so many doctors and counselors, but no one is willing to help. It's ashame that no one is watching this closer.  =

Name: Catcorn • Date: 01/09/2007 10:35:21

Hiya Tonix, my son is 7 years old with a porencephalic cyst. I didnt see this until i had posted mine on the moms of special needs children forum. He was only diagnosed when he was 5 with this problem as he had a few epileptic fits and needed an MRI and EEG. He began walking at 11 months, started mainstream school at 4 years old so its not holding him back to much. Because of it he has been diagnosed with epilepsy, mild cerabral palsy, ADHD and is dyslexic but he can still walk, (slight limp) talk, and play like the kids his age. How bad is your child affected so far?  =

Name: Maria • Date: 07/12/2007 21:14:25

My daughter is 14 months hold & I was just told today that the cyst in her brain is a porencephalic cyst. She is not walking yet, & since the cyst is located on the right side of her brain, she does not use the left side of her body. My neurologist advised that they cannot remove or drain the cyst, it isa little larger than a quarter. We have started therapy this week to try to strengthen her left side. I was told that is the only treatment. I am going for 2nd/3rd & possible 4th opinions. When I asked the therapists if they've ever treated anyone with this same diagnosis, but they never have. I am so nervous for the future of her life....  =

Name: Nina • Date: 07/24/2007 11:07:31

Hi  =

Name: Nina • Date: 07/24/2007 11:20:54

I am 34 and was diagnosed with a porencephalic cyst when i was 3 months old.

Mine is in the back of my brain near my cerebral cortex. I have never had any complications from it, wouldn't even know it was there if not for the occasional CT or MRI.

I am currently pregnant with my first child & they are monitoring the cyst closely to make sure there is no pressure on it etc. but no complications have ever come of it.

I'm living proof that it is possible to be successful & overcome this type of abnormality. I hold two college degrees & have a successful professional career. Not bad for my mom being told that I was going to be severely retarded, blind, and never walk or talk.

If you have any questions, please feel free to email me at cmt72@juno.com. I wish the best to all of you with children with this condition & don't just accept everything the "experts" say without question.  =

Name: Suzanne Choppen • Date: 08/09/2007 04:28:11

Our now 21 yr old son was diagnosed with porencephalic cyst at 5 months old. He had approx 25% of brain tissue destroyed . He walked at 12 months and talked relatively normally. He had suckling problems on one side only. At 2 yrs he had a mild epileptic fit and was put on anti-epileptic medicationfor 16 yrs. He epilepsy was always fully controlled. Although a slow learner he he was still within the average range. He has a mild hemiplegia and poor field vision but rides a 3 wheeler bike and can hold down a job.  =

Name: karen • Date: 08/11/2007 19:17:13

hi  =

Name: Mallory • Date: 09/21/2007 11:51:06

Hi, my 14 year old daugher was diagnosed at 18mos of porencephaly. She has infrequent seizures (3-4 per year) and takes medication to control them. She is honors classes at highschool and plays many sports. She has no vision problems. He cyst is quite large, in the right parietal region. We are lucky to live near a great children's hospital and we keep an eye on it to see if it gets bigger or causes pressure. She is so normal, but I always have an uneasy feeling about her future. I would like to know if anyone has a child/teen that has had surgery to drain the cyst and how invasive is it. Can they just guide a draining tube in? What are your experiences with these shunts? How do they affect daily life.
Mals mom  =

Name: kebena • Date: 10/17/2007 14:02:27

I don't have a child with this problem. but I know about it. I'm going to a medical school. I've seen it couple of times in ultrasound.  =

Name: soontobemomof3 • Date: 10/18/2007 23:04:31

We are in the process of adopting a baby with a porencephalic cyst in his right temporal parietal region. My question is: What size is a cyst considered "large" His cyst is 2.7x5.6 cm. Is that typical/small/large for a porencephalic cyst? Any help with this would be wonderful. Thank you. Terri  =

Name: sheila • Date: 11/03/2007 11:43:12

I have a 7 year old daughter with a porencephalic cyst. She also has hydrocephalus with a shunt. She has alot of physical dissabilities and also has seizures. But overall she is doing great. If you would like to talk I totally understand. Ive been there myself.  =

Name: Matt • Date: 11/09/2007 13:46:58

This is really scary my wife and I just found out about an hour ago that our 6 month ol daughter has 2 porencephalic cycts on the back of the brain. What can we expect?  =

Name: Dr. Rizwan • Date: 11/11/2007 14:49:08

I have a female patient 9 years of age. She is suffering from porencephalic cyst in left frontoparietal lobe with mild left hemisphere atrophy.
Kindly advise treatment as father is not willing for surgery. Can we treat her with laser or any other non-surgical manner.  =

Name: claire • Date: 12/19/2007 19:09:54

hi im from australia and my son is now 13 wks old he was diagnosed with NAIT (thrombocytopenia) at birth as a result during the pregnancy he developed a porencephalic cyst in his front right temporal lobe that takes up 4-5%. He hasnt been visually tracking objects although his eyes do respond to light. Any one have similar probs?  =

Name: Andy • Date: 01/11/2008 13:54:50

Hi there, my daughter megan is now six years old and suffers from epilepsy which is caused by a cyst. she was a prem baby with complications and the cyst was dignosed after several seizures. She is now at school and doing ok with a little extra help one to one. All of her motor skills are fine and she is very happy, loving and sociable. Good luck with everything and try not to think about the potential problems just concentrate on the good things!!  =

Name: jo • Date: 01/29/2008 18:38:15

my 13 m o son has it  =

Name: claire'smom • Date: 02/27/2008 16:14:05

Hi. We were just told that my 14 mo little girl has a porencephalic cyst in the right side of her brain. We have visited the specialist and they told us that this is pretty common. Is it really? I have not met or heard of anyone else with this condition except for those of you who have posted on this website. Does anyone know of a good specialist in the western states that know a lot about this condition? She is left sided hemiparesis and through therapy she is starting to learn how to use her hand as well as crawl up stairs. Other than that she is a happy baby girl. Does anyone have any other information? Thanks!  =

Name: jessica • Date: 03/10/2008 09:11:48

Hi,Iam from Australia.I have a son who is 4yrs old.He has a porencephalic cyst on the left side of his brain that is on the main ventrical.Drs are unable to remove it so they have put in a shunt to drain it.He was born with hydrocephalus and was operated on immediatly.He also has epilepsy,c.p,visual Impairment and a few other medical issues associated with the cyst.He has not had a seizure for nearly 2yrs and has just started to try and take a few steps independantly.He is able to verbally communicate but is interlectually delayed.He is the most adorable little boy and with all his problems and setbacks is well adjusted to life.It is very interesting to me to read these stories as i have been told here that there is not many cases of it.I have noticed though that most cases have occured with the cyst on the right side and not the left.  =

Name: Pat • Date: 03/21/2008 10:01:07

I have a very large porencephalic cyst and hydrocephalus diagnosed 5 years ago at age 55. After seeing several neurologists and neurosugeons. I was advised by all, do not operate.  =

Name: jessica • Date: 03/29/2008 07:55:36

Hi Pat,
That is very interesting that they have told you not to operate.As you would be aware hydrocephalus is fluid on the brain,so how have they delt with that if they havent put a shunt in to drain it.Have you had it for a long time or unaware of how long you've actually had it for.  =

Name: Pat • Date: 04/02/2008 19:05:09

Hi Jessica,
Because of the large size of the cyst and I am functioning at a high level, considering my condition. If they operate there could be a chance I could have many other complications. The hydrocephalus is caused by the cyst. The flow of the csf is blocked. I just have severe pressure in my head, constantly .
Taken many medications, nothing helped.
If I overdue I have to rest.
Noticed a tremor in my right hand 5 years ago. Been on disablity for 4years. Probably never should have worked, always had learning difficulties. I also have a very large head. Never been able to wear a hat or wig. The doctors think I could have had a seizure before birth. It took a long time to understand
my illness. I go for an MRI once every year, no change.  =

Name: jessica • Date: 04/05/2008 06:50:33

Hi Pat,
It's good to hear that there is no negative change in your yearly MRIs.My son has routine checks as well to make sure that the cyst isnt growing & to check that the shunt is working well.So far its all been good.I could well imagine that the preasure in your head wouldnt be very pleasant at all.We live in the country here so there's not many other cases that we are aware of .It's totally different when we go to the childrens hospital as there are so many cases of children with shunts .Our little boy proberly woulnt have so many issues if it wasnt for that retchid cyst.Do you suffer from quite a few headaches as ive been told that this can be a known symptom.My little boy isnt at the stage where he can clearly communicate those types of ailements to us yet.  =

Name: PAT • Date: 04/05/2008 10:38:19

I live in NY. I asked about shrinking or removing the cyst. The problem, there would be an empty space and a blood clot
could form. Which could leave me in worse shape. If there
were MRI's in the forties, the cyst and hydrocephalus would
have been detected. But had they put a shunt, in I might not be here today because the shunt was invented in the thirties. Today they have much mor knowledge.
I am very glad to finally know what was wrong with me.
I have sensitivity to light and sound. Sometimes I have words
that don't come out, but ther on the tip of my tongue. This also
could be because I'm sixty. What I have learned from this
chronic illness that things make a lot more sense. I didn't
understand why I didn't do well in school. I also think if the cyst
was located in a different part of my brain. I might not be able to
function. My pain is mostly on the right side of my brain. I want you to know I worked, married had kids,and I am a grandmother.  =

Name: fcatalbas • Date: 04/05/2008 23:16:43

Hi Michelle, how can we reach you to the issues?Thanks in advance.  =

Name: parker • Date: 04/20/2008 06:17:04

Good morning tonix, my son has a porencephalic cyst. This a very rare cyst. Please get back to me  =

Name: parker • Date: 04/20/2008 06:29:47

My son (now 5) was a preemie. I lost his twin 5 mos in gestion(inside) She had a major stroke, the other twin (my son) survived and had a minor stroke and in result a porncephalic cyst. He suffers from seizures daily, has mild cp, can barely talk, he acts like a 2 year old, autistic tendancy, short attention span, still in diapers. He is a special needs boy. Need advice  =

Name: Kendra • Date: 04/28/2008 09:46:25

Hello my son is 13 weeks...just last week he had to get an ultrasound because i had some concerns about his motor skills and other things that i knew was not right., doc suggested the ultrasound and the prediatrican says that he has a small cyst but before she can tell me anything she wants to talk to the nuerologist,,im scared and ive never been through this need adice....kdunn1228@yahoo.com please contact me so i can talk to someone  =

Name: Older with same • Date: 05/01/2008 21:42:06

I am an over 50 year old woman. I just found out I have a porencephalic cyst. I believe the size and location of the cyst matters. I was shocked at the report because mine is in my r. temporal lobe. I am a medical professional who breezed through school and also a fine artist. I do have migraines, synesthesia and some odd olfactory symptoms. I can smell things which aren't there and see colors when I hear music.
I was aware of the condition in others because during one part of my career I was involved with case management of children with this diagnosis as well as other conditions which affected the brain.
Guess what I want to say to the parents of children who wonder about the future for their children is that odd things can happen. My IQ is well above average and the joy i have had from having the experience of seeing music is wonderful.
I wonder about the real incidence of this condition. if I had not had an MRI, I doubt this condition would have gone undiscovered In doing a thorough medline searches and going through my medical references, the condition is described as "extremely rare". The main symptom which caused my Neurologist to order the MRI was my realization that my migraines are sometimes associated with the perception of odd odors.
I have had migraines for as long as I can remember. I just lived with them because I thought all headaches felt like mine and i have a very high pain threshold.  =

Name: parker • Date: 05/02/2008 14:58:02

To Older with same, My son has a cyst on his brain, he is 5 years old, He was recently put through neurophysycology exams to see where he is. He his below a 2 year old in speech, motor skills , and vision. He uses a Go Talk 9 for his speech,still in diapers, seizures every day, low attention span, autistic tendancy, they class him as special needs. Did you have seizures, or just migranes.  =

Name: Older with same • Date: 05/03/2008 19:52:38

Parker: I had migraine and no known seizure activity. I also have the mixing of senses in that I see color often when I hear music and even sometimes when I read. I also smell things which aren't there. This is called synesthesia. However, from what I understand I could have a form of epilepsy which does not have seizure activity. I have not yet had an EEG, but it is being scheduled.
I am fortunate in that I have had no usual symptoms related to the cyst. My neurologist was thinking I might have a brain tumor but was as surprised as I was with the result of the MRI. I haven't seen the images yet (will when I get the EEG) . He indicated that the cyst is pretty large and halves of my brain are quite unequal in size.
It sounds as if your son is getting good follow up with specialists in early childhood development. These professionals can help him and help you with strategies to stimulate the brain so it can compensate as much as it can. l wish you the best.  =

Name: jessica • Date: 05/05/2008 09:02:30

Hi Parker,You mentioned that your son has vision effected .Is that due to the cyst.Has he had a shunt inserted.My son has just turned 4 and has quite affected vision.I found that he loves anything with motion like a swing or seesaw etc.He tends to be really calm when hes doing these things and thats when he learns a lot of his things like speech etc.I taught him the alphabet when he was on a swing outside.Wether this sort of thing will help or not (I hope so).  =

Name: parker • Date: 05/10/2008 06:15:07

to Jessica, my son has no shunt. The cyst is a fair size . He loves country music, it helps him calm down. As for his vision, they say because the cyst is causing his vision problems. you say you have a 4 year old the same, How are you and your husband dealing with these challenges everyday. Both of work, I work steady days, my husband stead afternoons. Johnathon (son ) seizures every day at least 4 a day.  =