Are Arachnoid Cysts Hereditary?

[tamlis58]

My mother has had 2 Arachnoid Cyst removals, and Im wondering- can they be hereditary?

[butterfly6169]

I'm not sure if they are. But my son has one in the back of his brain. They need to monitor it every couple of years to make sure it hasn't changed in size.

Why did they remove your mothers cysts?

[tamlis58]

Hi butterfly

My mother had to have both of hers removed because they were compressing her optic nerve and causing problems with her eyesight. She had her first surgery and then 5 years later, it had grew back and she had to have it removed again. The doctors cant gaurantee it wont grow back again, since they could not remove 100% of it since part of it was attached to her brain tissue.

I just wondered if could be inherited. I know anyurisms are and the drs told my mother she was probably born with hers. (Altho the symptoms didnt show up until she was in her 50's)

Where is your sons cyst?

[Suecr]

Hi, my daughter was born with a massive septated supracellar AC, a middle cranial fossa cyst and hydrocephalus. Craintomy at 5 days, shunt placement, two revisions. Facing more. Anyway, her NS at Boston CH and literature I have read say basically it is just a fluke of development. When the mengines form, the arach splits and forms pockets. Each case is different, but they usually always come back after surgery, but the trend seems to be that it may be a long time before re-growth or is smaller than orig size. I think the consensus is that they are not inherited; however, there are cases where they are present in other members of a family; however, which may be due to environmental influences.

[butterfly6169]

Hi tamlis58

My son's cyst is in the back area of the brain. They found it when did a CTScan 2 years ago at the age of 14 yrs. old.
He had passed out at school and was brought to the ER by ambulance. He was unresponsive for over 20 minutes. The paramedic told me she was getting worried they couldn't bring him to. He was breathing just completely unconcious with a rapid pulse. He was in class,felt weird and went down to the floor.
The ER doctor didn't want to do a scan, but I insisted because my mom has a brain aneurysm and my grandmother has had and again has a brain tumor (non cancerous).
They did another scan last year when he fainted again at that time the cyst didn't increase at all. He has been to a neurologist and cardiologist both didn't have much to offer except to monitor the cyst. Our family doctor is monitoring him. He also had an EEG, Echo, and the 24 hr. heart holster those test were all normal.
I am not sure the size of it I would have to look at his scan reports. I always get copies of medical reports so I can refer back to them in the event something happens.
They never gave us an answer to why he passes out. It is very scary, he is 16 yrs.old now and has his learners permit. I tell all his friends what they need to do if he passes out. Yes I am a very proctective mother.
I am wondering if my son's cyst presses against a vessel or nerve. I feel there is some connection to the cyst and him passing out.
As for them being inherited I'm not sure. I have some kidney issues in which no one in the family has. So I guess sometimes things happen or skip generations.

[tamlis58]

Thanks butterfly and Suecr for your responses.

Ok, Im glad theres nothing to worry about in that respect. We pray hers never returns-the doctor doesnt seem to think they will.

butterfly, I hope they find out why your son keeps passing out and Sue I hope your daughter does well with her treatment and I pray they both recover completely. I know that feeling when your child is sick and you feel so helpless. My son was born with Megloureter (his kidneys, ureter, and bladder were not working right and caused his urine to back up into his kidneys and resulted in almost totally destroying them) It wasnt discovered until he was 6 years old and by then it had did some damage. Even though I was very scared he went on and had surgery and did well and now he is 23 years old.


God bless.

[butterfly6169]

tamlis58

you are the seocnd person I've heard from about the child being born with Megloureter. Thank God he is doing well now. My oldest son was born with hypospadius (3 operations), middle son born with UPJ obstruction (surgery @ 3 months old they found it when I was pregnat with him) and my youngest who passes out gets kidney stones he had 3 at the same time and this hospital in our town has got to be one of the worst. they didn't want to scan him then either. I had to fight with the ER doctors on that also. They felt because his Dad & both get them that he didn't need to be scanned.
He developed hypronephrosis from 1 of the stones obstructing the kidney. He finally passed the stones but it was a hassle at the hospital. I gave up on them & called our doctor he came right up & took over.
I should write a book someday about all things we have been through. I'm sure a lot us feel this way.
Some people I talk to cannot believe what we have been through.
But I say it could always be worse. I try to stay positive but it gets tough sometimes.

[kdagain]

Hi Tamlis.
My son has a very large congenital multilobed intraventricular arachnoid cyst. When I was first reading about them, I did not find anything suggesting heredity.

He was 7 before they found it after much concern since he was a month or so old. The medical profession can be so rigid in their textbook understanding. After 2 surgeries to relieve the pressure and 10 years he is doing fine. It still takes up about 1/3 of his brain, mind you.. but unless he gets a virus, there doesnt seem to be any symptoms. He also has symptoms for Aspergher Syndrome... we will never know if that is cyst related or there on its own.

About the drop attacks... has anyone said anything about a chiari malformation? I am just learning about them and you know how when we do, we see them everywhere...but, drop attacks can be caused by them and very very often the docs don't look for it. It is caused most often by a congenital skull malformation that forces a part of the cerebellum through the opening in the back of the skull whre the spinal cord enters.

[uvamomb]

Butterfly, how in the world did your son get a learner's permit when he has a problem with passing out? My friend had uncontrolled seizures and they immediately took her license. Couldn't he pass out at the wheel and kill himself or others? I'm so sorry he's having these problems. God bless, you, it must be very hard on you. You sound like a wonderful Mom!!!
God bless both you and your son,
Kathy

[butterfly6169]

Hi Kathy

Thanks for yor nice comment.
My son hasn't passed out in 13months. (Thank God)We are with him at all times in the vehicle. We are in no hurry for him to get his license. He will have more tests before he gets cleared to get his license.

It's a constant worry but somehow we get through it. I love my kids and will always be there for them. Just as any good parent would be. I've seen some kids who's parents don't even care and that breaks my heart. Children are a gift and we should all be greatful to have them.

Take Care

Kelli

[Ed Ebbs]

Gosh,
I have one the size of a walnut on the left side of my brain along with two smaller ones. They found them 10 years ago looking for MS and I turned out to have Neuro-Lyme which was taken care of. At the time they told me I was probably born with them and there was nothing to worry about? Should I be having a MRI to keep track of these every so often?

[butterfly6169]

It might not hurt to get a CT scan or MRI just to make sure there's no change.

Most things are usually found by " accident". As was the case with many health issues within my family.

The doctors said my son was probably born with his also. They do want to monitor his because cysts can grow.

It just happened to have been found because he passed out and I demanded them to do a CT Scan because of the family history with tumors and aneurysms.

I wish insurance companies would allow PET Scans every so many years. This would help rule out so many things and all the guess work we go through.

Take Care

Butterfly6169

[butler6pack@webound.com]

Hi. I have a four year lod daughter with an arachnoid cyst in the left temporal lobe of her brain. Her doctors say that it is just a birth defect with no specific cause. Her cyst isn't removable unfortunantly. What symptoms does your mom have?

[kathop]

I'm new to all of these forums, and so grateful there's something like this available. Thank you all for being so up-front. In 2004, I had an MRI to r/o MS and was atold I had a tiny cyst and "non-specific" flares(?). I did not see the films. In April 2007, I had another MRI because MS symptoms were persistent. This time I saw the films. Tiny cyst? It's an arachnoid cyst and is now larger, up from 4.0cm in 2004 to 4.5cm. It sure doesn't look tiny, and my neuro kept saying he'd never seen one that large. When I asked him about the difference in size, he said it was nothing to worry about. That is not an answer, of course.

Can anyone tell me about this condition? I've always had a couple of horrible sick-making headaches a year, bizarre "waking nightmares" that involve confused sensation, and I have a form of synasthesia. Now I have MS lesions along the corpus colossum. Does nayone know if MS and ACs interact? Rather than ask all my questions, I welcome whatever info anyone might have. (I'm also on the MS post.)

Thank you!
Kathop

[Suecr]

Hi, given all the reaserch into my daughter's condition, first you need to get your films on CD and bring them to a Neurosurgeon (not a neurologist) asap. They can evaluate what structues the cyst is pressing on and any cause effect to treat or monitor. These can br quiet then Bam! cause a host of problems for example, hers was 7 cm x 8 cm at birth (largest in newborn they saw) Caused hydrocephalus,hypotonia, developmental delays, vision problems (sees with saccades and exotropia), emotional instability, headaches, pituary gland dysfunction (needs daily growth hormone shot) intermittant ataxia, and now autonomic dysfunction causing sinus tachycardia. After 4 ops, it is smaller, but still distoring her brainstem, pit gland, optic nerves etc. etc. So very important to follow closely. Good luck.

[butterfly6169]

Hi All

It's been a long time since I've been on here. I've been trying to catch up on the posts.

My son had another scan done and they found another arachnoid cyst but don't seem to be to concerned about it...BUT I am.
He has seen a neurologist for this. I have to see one for myself for nerve damage (long story). Anyway when I go I will ask what he/she thinks about my son's cysts. I'm not looking for them to do any surgery I just want to know what we need to be looking for.

I also wake up at night with panic attacks wondering "what if". This scares the heck out of me.
I have another child who has problems with his RBC.

We have many many health problems in our family. It's very overwhelming most of the time.
Sorry to vent to y'all.
Thanks for listening.

[jadiee-x]

hey, i have been told they are not inherited, ive had mine since in the womb, my mother and father have no history of it in their families as far as we know.

doctors had assured my parents that the cyst had disburst itself by the time i was born, they were wrong! when i was 14 months old i showed signs of hydrocephalus, my head starting growing, bulging temples, convulsions, headcahes, sickness, you name it.
i had surgery then to have it removed but it was far too large to be removed, it covers half of my forehead and most of the side of the right side of my head, about the thikness of a computer mouse. therefore i have a vp shunt to drain the fluid it has produced, the shunt keeps it at a persistant size so it does not enlarge and squash my brain as it previously done.
im now 17, well next week =D. ive had 2 revisions since, one being only a month back...and have had other complications, like the tube migrating form the peritoneal cavity and stuff, but ive always been as well as anyone else with the exeption of the frequent headache =]

[rsox34]

I have one over my cerebellum and my nephew has/had two. He had the larger one fenestrated--it was near the frontal lobe. I have a shunt for mine.