Discussions By Condition: I cannot get a diagnosis.

Arachnoid cyst, intercranial hypertension, aspergers and more..

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: Anonymous
  • May 24, 2007
  • 06:52 PM

Hiya,

I'm a 31 year old mum from England and i just came across this site whilst rying to find answers for bith me and my son - sorry if this is going to be a long post - i tend to ramble on a bit, lol!

OK - the basics.. My son (8) has a diagnosis of Aspergers syndrome (form of autism), ADHD, Tourettes, Sensory dysfunction, obsessive compulsive disorder and dyspraxia...

At around two years old he was tested as he was showing signs of petit mal fits - whilst doing the MRI the doctors noticed he has an arachnoid cyst on the right fromtal lobe. Now - this was all before he was diagnosed and i was told it would disperse and wasn't anything to worry about.........

Jump forward six years (now) - and at the last appointment with my sons paediatrician she mentioned that he should avoid any physical activity - incase the cyst ruptures!!!!!!!!!!! NOW she tells me!!

Soooooooooooooo (sorry - i warned you i ramble, lol!) i've been looking about the net for some reliable info regarding arachnoid cysts - it's a flippin' minefield! But on my internet travels i have found out that lots of sufferers of these types of cysts can present with intercranial pressure - que the alarm bells.......
I have had intercranial pressure off and on for years and have had several lumbar punctures to release the pressure. Reading up on the link between the cysts and IP isn't too reasuring............ There's lots of info about it being progressive - and i've certainly been getting lots of strange symptoms these past few years - which my neuro ignores.....

I don't know what to do - :( for me or my son.

Anyone has any similar experience?? Or does anyone know anything about these conditions???

Thank you for reading xxxxxxxxxx

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11 Replies:

  • HiMy son has all the same he has a right front lobal cyst since birth he is now 20 yo, he has aspergers, ocd, tourettes, adhd, cyst, epilesy, oppositional deficance disorder, intellectual impairment and so the list goes on.I was told that he could never play sport with the cyst as he could explode or rupture causing more damage, he has just turned 20 this year and is so going strong he has serious headaches though but the doctor gives him meds for this, as they were turning into migranes.He is now under a pysch doctor who precrises his meds but now his meds have been taken off the market and now i dont know how to get them as we live in Australia. I was told I would have to reasearch the net for suppliers, what a joke that is.
    Anonymous 42789 Replies
    • December 2, 2007
    • 10:01 PM
    • 0
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  • Hi mum in England, Me, going nuts. I went to request a letter from the Neurologist to get these people at the school district to help my 6 year old with Asperger, but instead he said i need to talk to you and referred my child to en ENT.He never really went over the results, but I requested them and read it myself. An MRI was just recently been performed and besides having mastoid disease it shows an arachnoid cyst of 12mm in size. It has taken me about three days to reason. What the hech to do? Nobody has explained anything. What did your son's doctor say about physical activity? I mean intuition says they are at risk, but what exactly do we need to do for them? Help?!!!:confused: Hiya, I'm a 31 year old mum from England and i just came across this site whilst rying to find answers for bith me and my son - sorry if this is going to be a long post - i tend to ramble on a bit, lol! OK - the basics.. My son (8) has a diagnosis of Aspergers syndrome (form of autism), ADHD, Tourettes, Sensory dysfunction, obsessive compulsive disorder and dyspraxia... At around two years old he was tested as he was showing signs of petit mal fits - whilst doing the MRI the doctors noticed he has an arachnoid cyst on the right fromtal lobe. Now - this was all before he was diagnosed and i was told it would disperse and wasn't anything to worry about......... Jump forward six years (now) - and at the last appointment with my sons paediatrician she mentioned that he should avoid any physical activity - incase the cyst ruptures!!!!!!!!!!! NOW she tells me!! Soooooooooooooo (sorry - i warned you i ramble, lol!) i've been looking about the net for some reliable info regarding arachnoid cysts - it's a flippin' minefield! But on my internet travels i have found out that lots of sufferers of these types of cysts can present with intercranial pressure - que the alarm bells.......I have had intercranial pressure off and on for years and have had several lumbar punctures to release the pressure. Reading up on the link between the cysts and IP isn't too reasuring............ There's lots of info about it being progressive - and i've certainly been getting lots of strange symptoms these past few years - which my neuro ignores..... I don't know what to do - :( for me or my son. Anyone has any similar experience?? Or does anyone know anything about these conditions??? Thank you for reading xxxxxxxxxx
    Nicoco 3 Replies
    • January 18, 2009
    • 03:07 AM
    • 0
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  • Why not have it operated on and have either an internal shunt or a cystoperitoneal shunt?
    richard wayne2b 1232 Replies
    • January 18, 2009
    • 02:08 PM
    • 0
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  • Hi, Well actually no one has yet explained anything. I read the report myself and all the neuro said was don't jump to conclusions. The reports states that it is 12mm, is that considered large enough for a shunt?:confused: What is a cystoperitoneal shunt? Is it as invasive as surgery and what complications can arise from the shunt itself? Why not have it operated on and have either an internal shunt or a cystoperitoneal shunt?
    Nicoco 3 Replies
    • January 18, 2009
    • 07:52 PM
    • 0
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  • I'm not a neurosurgeon,but12mm is only less than half an inch so that I seriously doubt that anyone would recommend surgery.A cystoperitoneal shunt is a connection between the cyst and the peritoneal cavity(the abdomen).The risks are infection and bleeding mainly.
    richard wayne2b 1232 Replies
    • January 19, 2009
    • 01:55 AM
    • 0
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  • Yes,it's invasive surgery.
    richard wayne2b 1232 Replies
    • January 19, 2009
    • 01:56 AM
    • 0
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  • My husband has a inoperateble arachnoid cyst. He had surgery about 2 yrs ago to have a shunt put in it. And it goes down into his stomach. He has been complaining that the front of his stomach hurts, and we believe it might be from the shunt going into his stomach. And i had been noticing since his surgery 2 yrs ago, that his stomach is extended. He has been eating more. about a year, i took him to the regular doc and spoke my concern about his extended stomach. She said he was fine. And he not too long ago had a cat scan to make sure the cyst isnt getting any better.
    moonbeamluna 1 Replies Flag this Response
  • Arachnoid cysts are cerebrospinal fluid covered by arachnoidal cells. Intercranial hypertension is the pressure in the cranium and thus in the brain tissue and cerebrospinal fluid. Aspergers Syndrome is a neurological condition which is categorized by virtue of it's qualitative impairment in social and behavioral functioning.
    Skyler H 4 Replies
    • January 22, 2010
    • 11:10 AM
    • 0
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  • Asperger's Syndrome Symptoms can vary from others as they are wide. With some help and guidance can treat the child a long way. The main symptom seen in these patients are poor social interaction with odd speech and mannerism. Asperger is not any acute and chronic illnesses but is a condition that requires better understanding. It is difficult to detect Asperger in its early stages.
    Nicolas 3 Replies Flag this Response
  • hi, i am actually trying to find information for my 25 yr old sister who just had a cystopertoneal shunt placed last week. she's having bad bladder spasms. well anyway, i can sympathize and know the worry all of you are feeling because my sister had a subarachnoid cyst that encased her brain stem, the cyst/tumor actually was as large as a golf ball the neurosurgeon said. well she had a crainotomy to remove the cyst-horrible experience for her and our family! it helped for a little while. she had spinal taps, she did everything she possible could until her last resort was the shunt. all of the neuros and surgeons told her that a shunt for neurologist is like a hemorroid for a gastrologist. but at last she had no other choice. but the pressure returned so then she ended up w/ the shunt and seems to be doing better, except these bladder spasms that are killing her. she told me today that she doesnt have a headache, which i havent heard in years! wow! so i dont know i would suggest the shunt or at least look into it. get other opinions from other neurologists/neurosurgeons. the more dr's can be helpful. get trusting dr's because trust me there are wackos out there. good luck and i hope all your families work out for the best. and those freaking headaches get better and strength to the family members because it is hard for the pt but also hard for the family! trust me i know
    Anonymous 42789 Replies Flag this Response
  • Aspergers is often not identified in early childhood, and many individuals do not receive diagnosis until after puberty or when they are adults. Teens with Aspergers are usually aware of their differences and recognize when they need support from family.
    Nicolas 3 Replies
    • August 25, 2010
    • 00:29 PM
    • 0
    Flag this Response
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