Newly Diagnosed and very confused and scared

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Newly Diagnosed and very confused and scared

Postby jacquemouton » Wed Oct 11, 2017 2:12 pm

Hello my name is Jacque and I am 39 years old and have been having absence type seizures that I pretty much just dealt with because of lack of insurance for about 7 years now, this past summer I had a grand mal seizure and finally got insurance so I went to a neurologists. They put me on seizure medicine and did an EEG which showed something abnormal so did an MRI which ended showing that I had 2 venous angiograms??? one measuring 1.3 cm in my right temporal lobe and the other measuring 4 mm in my right frontal something (all of these medical terms confuse me) since my grand mal seizure my memory, speech and many other functions have dramatically changed. My neurologists is sending me to Houston to a team of Neurologist to see about having these angiomas removed because he says with these angiomas the medicine will not stop the seizures. The only way to stop them is to remove them from my brain? I am terrified. I will admit a lot of what he said went over my head so I might have missed a bunch of what he said, I am waiting to hear from the doctors in Houston as to when I go see them and I found this group and was hoping maybe other people who have gone through this can tell me more about it. Nothing was said that I can remember about cavenous? angiomas and the MRI report only says venous angiomas so I am not sure if they are related or the same or go together or what.. I am so confused and scared. I did ask him if this is life threatening and he said that very rarely it can be but that is very very rare so that is good. Any advice or anything would be great. Thanks.
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Joined: Wed Oct 11, 2017 1:59 pm

Re: Newly Diagnosed and very confused and scared

Postby Elizabeth » Fri Oct 13, 2017 1:10 am

I'm not sure, but I'm guessing the terminology might be a little mixed up. I'm guessing you might have a developmental venous anomoly or angioma (aka DVA) and maybe a cavernous angioma? With a DVA they tend to not be problematic but they can have associated cavernous angioma that can sometimes bleed and cause problems. At the very least, I'm guessing you have had a cavernous angioma that bled at some point...maybe in the temporal lobe...that area tends to cause seizures when blood gets on the brain tissue. So in that respect, part of what your doctor said can make sense. If you have a DVA, they should not be removed(they are an important part of blood circulation in the brain), and they rarely cause problems. But, if you have a bleeding cavernous angioma that's causing might be best to remove it if medication can not control the seizures. Good news for you is that there is a pretty active group of Angioma Alliance members in Texas. I think they might be in Austin but reach out to them. If you are on Facebook, you might find them faster there. One of the active members in Texas is named Jo...I will look for her info and repost. You can reach out other and see if she can help you find good doctors locally. I think there are some good doctors there, so you're in luck there too. I'll get back to you! Best!
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery.
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