Hello - new member - brain carvenoma

[KimS]

Hello
My name is Kim and I just had my first seizure last week. They found what they think is a brain carvenoma in an Angio performed yesterday. They have my on Dilantin to prevent future seizures and I am just looking for people that were/are in my similar situation to talk with. I am 29 years old and this is really the first health problem I am dealing with, so anything helps.
Thanks

[Mike Weins]

Hi Kim

Welcome to BrainTalk. I am not sure which forum to direct you to Hopefully somebody else may know where to guide you to.

[TC44]

Hi kim,

Most likely you'd want the Braintalk Epilepsy Forum <== That's a link you can click on, and you can also find the forum listed under "Specific Neurological Conditions (A - L)"

TC

[linniec]

Kim,
There are people in the aneursym forum here on braintalk who know angiograms(and quite probably the possible results of angiograms)...They may be able to help as well. The link to the Aneursym forum is http://brain.hastypastry.net/forums/...splay.php?f=85


Linnie
Atlanta,Georgia
"Beyond a wholesome discipline, be gentle to yourself."

[linniec]

Cavernous malformation is a rare disorder of the capillaries and smallest veins in one part of the brain. The disorder occurs when a blood-filled mass resembling a tumor, called a hemangioma, forms. Symptoms include headaches and seizures. Cavernous malformation is frequently inherited.

Is there any treatment?


Treatment for cavernous malformation is symptomatic and supportive. Surgery may be performed if the malformation is easily accessible and is causing seizures or bleeding in the brain. Surgical procedures may be considered too risky for some elderly patients.

What is the prognosis?


Cavernous malformation is not always life-threatening and often does not require any specific treatment. After surgery, patients generally improve, some quite significantly.

What research is being done?


The NINDS supports research on disorders of the central nervous system such as cavernous malformation. The goals of this research are to increase scientific understanding of these disorders and to find ways to prevent, treat, and, ultimately, cure them.

Select this link to view a list of studies currently seeking patients.

Organizations

National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291

Angioma ********
107 Quaker Meeting House Road
Williamsburg, VA 23188
info@angioma********.org
http://www.angioma********.org
Tel: 866-HEAL-CCM (432-5226) 757-258-3355



Related NINDS Publications and Information

NINDS Arteriovenous Malformation Information Page
Arteriovenous malformation information sheet compiled by the National Institute of Neurological Disorders and Stroke (NINDS).
Arteriovenous Malformations and Other Vascular Lesions of the Central Nervous System Fact Sheet
Arteriovenous malformation fact sheet compiled by the National Institute of Neurological Disorders and Stroke (NINDS).

I found this at http://www.nih.gov (A great start for beginning research)

Linnie
Atlanta, Georgia

[Alphons]

Originally Posted by KimS

Hello
My name is Kim and I just had my first seizure last week. They found what they think is a brain carvenoma in an Angio performed yesterday. They have my on Dilantin to prevent future seizures and I am just looking for people that were/are in my similar situation to talk with. I am 29 years old and this is really the first health problem I am dealing with, so anything helps.
Thanks

Hi Kim,
Just read about your Carvenoma, I had my first siezure 4 years ago, it was a major and I was rushed to hospital on a life support, however 3 days latter I was back at work, slowly.
It took doctors 18 months to find my Carvenoma and 12 months later I went into hospital to have it removed, but last minute the surgens backed down as they thought I may loss much of my eyesight.

Initally I had full faith in the Surgens, but was happy that they didnt opperate.
I till have annual MRI Scans and occassionally I get mild headaces, but the thing I find best is to not think about it and I stay possitive about my future with it.

Were are you with yours?

[marie33]

Originally Posted by KimS

Hello
My name is Kim and I just had my first seizure last week. They found what they think is a brain carvenoma in an Angio performed yesterday. They have my on Dilantin to prevent future seizures and I am just looking for people that were/are in my similar situation to talk with. I am 29 years old and this is really the first health problem I am dealing with, so anything helps.
Thanks

How are you now?

[Fletcher C.]

Kim,
I'm 40 and recently found out that I too have a brain carvenoma. It has not caused me any seizures, however, I do get headaches from time to time. I was told by my Neurologist just to monitor yearly with MRI. He started me on an asprin a day regiment but later told me I really dont need to do that. Now after reading some of these posts, I feel as if I should be a bit more cautious.