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Grey Matter Heterotopia

Sat, 01/30/2010 - 19:28
I am 35 and recently found that I have grey matter heterotopia. I am currently on seizure meds that have made the seizures less harsh but I still get them. I have memory loss, confusion, dizzy spells (head-rushes), body numbness, tingling, vision impairment at times, loss of coordination and difficulty speaking clearly. Although I can live with these problems I would like to know other people with this disorder and maybe what they have done for treatment.

Comments

Re: Grey Matter Heterotopiaeterotopia

Submitted by vangroovymom on Wed, 2012-07-11 - 23:10

Hi, I moderate an online worldwide group of families affected by perieventricular heterotopia. We currently have more than 80 families supporting each other. The group is comprised of adults with heterotopia and parents of children with heterotopia.

The group is on Facebook. You can find it by searching x-linked periventricular nodular heterotopia (not all members have the x-link form but my family does, or you can get more info at www.pvnhsupport.com

Yolaine

Hi, I moderate an online worldwide group of families affected by perieventricular heterotopia. We currently have more than 80 families supporting each other. The group is comprised of adults with heterotopia and parents of children with heterotopia.

The group is on Facebook. You can find it by searching x-linked periventricular nodular heterotopia (not all members have the x-link form but my family does, or you can get more info at www.pvnhsupport.com

Yolaine

I would like to hear more

Submitted by Heathertea25 on Sat, 2018-04-28 - 00:35
I would like to hear more please. Like outlook on life? My daughter is 3 found when almost 2 :( would just like to know everything

Re: Grey Matter Heterotopia

Submitted by tiffinaz on Fri, 2010-03-19 - 18:19

I am 25 an have bilateral periventricular nodular heteratopia which is also grey matter heteratopia. I started having seizures at 15 and now have uncontrolled epilepsy. The meds I take and seizures have affected my memory and thinking and make me so feel stupid! I have been in the epilepsy monitoring twice and have a WADA test and angiogram in one week because they are now wanting to do surgery on me so they have been doing all the pre-surgical tests. I get the depth wires(electrodes) next. The only thing I am freaked out about with surgery is losing some of my vision and not being able to drive. I can't imagine that. I was told that this is X-linked and if I was to have kids if it was a boy it would probably be mentally retarted so this is not a risk I want to take. This is something you are born with but doesn't always show up until you are a teenager. some people have it much worse. I have had some crazy experiences and the meds themselves have side effects that are not pleasent.

Hope this helps. 

I am 25 an have bilateral periventricular nodular heteratopia which is also grey matter heteratopia. I started having seizures at 15 and now have uncontrolled epilepsy. The meds I take and seizures have affected my memory and thinking and make me so feel stupid! I have been in the epilepsy monitoring twice and have a WADA test and angiogram in one week because they are now wanting to do surgery on me so they have been doing all the pre-surgical tests. I get the depth wires(electrodes) next. The only thing I am freaked out about with surgery is losing some of my vision and not being able to drive. I can't imagine that. I was told that this is X-linked and if I was to have kids if it was a boy it would probably be mentally retarted so this is not a risk I want to take. This is something you are born with but doesn't always show up until you are a teenager. some people have it much worse. I have had some crazy experiences and the meds themselves have side effects that are not pleasent.

Hope this helps. 

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