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  • AVMs of the brain...can anyone relate??

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    Old 08-21-2002, 10:17 AM   #1
    psycstudent
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    Question AVMs of the brain...can anyone relate??

    Hello to all! I suffer from AVMs of the brain. I was diagnosed with this condition ten years ago at the age of 16. At first, doctors couldn't figure out what the problem was, but with the help of EEG, CAT scans and MRIs they were able to come to a conclusion. I was put on Tegretal. Did fine for about 4 years. At the age of 21 my symptoms started occuring again (seizures, dizziness, headaches). Doctors said surgery was not the answer, so they decided that laser therapy (gamma knife procedure) would be best. They found I have 5 AVMs. The one in the upper left hemisphere was large and one in the lower right hemisphere. The therapy was performed with 8 doctors present. Everything was well. Approximately 6 months later, the left hemisphere of the brain got irritated and swollen therefore interrupting my nervous system and causing me to suffer from a stroke. Mind you, I was only 21 yrs old and the thought of a stroke didn't even come to mind or even mentioned by the doctors as a side effect. The stroke resulted in a disability of the right side of my nervous system. Was placed in the hospital for two weeks and all the doctors told me was that I will always walk with a 10% deficit. I used a cane for a couple of months and had physical therapy. I now walk with a limp without the cane, toes & ankles are partially paralyzed, I suffer from backaches every day of my life and have been taking Dilantin ever since. I haven't had a seizure since 1998 which I'm very thankful for. I am now 26 yrs old, working on my BA in psychology and thinking about starting a family. Doctors say that it's not a good idea because I'm on Dilantin and it's not safe. Can anyone relate?

     
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    Old 09-08-2002, 12:58 PM   #2
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    I had an AVM found when I had a seizure when I was 19. I had frequent seizures while on dilantin & tegretol. The first surgery was 2 yrs. later. I continued having seizures & two years after that(94) I had the last surgery to remove all of the AVM that was left behind.
    Last year I had a major seizure while vacationing. I refused to go to the hospital, but am confident that it was a mini-stroke. I couldn't move on one side for hours afterwords. Early in March this year I had 4+ seizures in one day & spent a wk & a half in the hospital. They apparently had me on some different drug, I had been on dilantin & neurontin, which had me hallucinating. I only vagually recall 3 of those days. I am now on dilantin & keppra & my new Dr. wants me to have a VNS inserted. That, I am not fond of.
    My Dad had a Sub. hemorrhage in Jan., so I'm sure the stress caused that amount of seizures. The past few years I have averaged about 5-6 seizures.
    I understand that dilantin is not "healthy" for an un- born child. Has terrible side effects, I'm sure you know. My question is, if you haven't had a seizure in 4 yrs. why can't your doctor try a different drug rather than dilantin? One that is "safer" for pregnant woman. Are you the only one in your family w/ an AVM? I am the only one in mine, but I understand that they are hereditary, or can be.
    I would have a chat w/ that Dr. about trying a better drug.
    Good Luck.

     
    Old 08-22-2003, 09:36 AM   #3
    mary salamone
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    I was diagnosed with avm,s 7\5 years ago when I went to the doctor with increasing bad miagrains. I was told that there were to many to count. as well as cavernous angenomias. I have a small miagrain every day and at least 4 or 5 debilitating miagraines a month accompinied by an aura of the smell of rotten chicken. It is believed that these are siezures in the parts of my brain that control my sense of smell. I suffered siezures at the age of 18 and at the time was diagnosed with epilepsy Wrong! I am now 42 and frighted at the prospect of a stoke or worse. I am not a canidate for surgical intervention because I have to many avm,s to touch and it would be playing "enie meanie minie mo". I also have trigeminal neuralgia an avm in each eye, psoriatic arthrits, and RA. I take tegratol,topomax and imitrex pills and imitrex injections and a slew of medicine for arthrtis. I still have maintained a positive outlook on life but would like to talk to other people with the same problems I try not to tell friend to much I know that can be tiresome sometimes. I also would like say that my son and brother also have 3 avm,s each and both have to take siezure medicine

    [This message has been edited by mary salamone (edited 08-22-2003).]

     
    Old 08-22-2003, 09:37 AM   #4
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    [This message has been edited by mary salamone (edited 08-22-2003).]

     
    Old 08-22-2003, 09:37 AM   #5
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    Quote:
    Originally posted by psycstudent:
    Hello to all! I suffer from AVMs of the brain. I was diagnosed with this condition ten years ago at the age of 16. At first, doctors couldn't figure out what the problem was, but with the help of EEG, CAT scans and MRIs they were able to come to a conclusion. I was put on Tegretal. Did fine for about 4 years. At the age of 21 my symptoms started occuring again (seizures, dizziness, headaches). Doctors said surgery was not the answer, so they decided that laser therapy (gamma knife procedure) would be best. They found I have 5 AVMs. The one in the upper left hemisphere was large and one in the lower right hemisphere. The therapy was performed with 8 doctors present. Everything was well. Approximately 6 months later, the left hemisphere of the brain got irritated and swollen therefore interrupting my nervous system and causing me to suffer from a stroke. Mind you, I was only 21 yrs old and the thought of a stroke didn't even come to mind or even mentioned by the doctors as a side effect. The stroke resulted in a disability of the right side of my nervous system. Was placed in the hospital for two weeks and all the doctors told me was that I will always walk with a 10% deficit. I used a cane for a couple of months and had physical therapy. I now walk with a limp without the cane, toes & ankles are partially paralyzed, I suffer from backaches every day of my life and have been taking Dilantin ever since. I haven't had a seizure since 1998 which I'm very thankful for. I am now 26 yrs old, working on my BA in psychology and thinking about starting a family. Doctors say that it's not a good idea because I'm on Dilantin and it's not safe. Can anyone relate?

     
    Old 08-22-2003, 03:22 PM   #6
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    Quote:
    Originally posted by psycstudent:
    Hello to all! I suffer from AVMs of the brain. I was diagnosed with this condition ten years ago at the age of 16. At first, doctors couldn't figure out what the problem was, but with the help of EEG, CAT scans and MRIs they were able to come to a conclusion. I was put on Tegretal. Did fine for about 4 years. At the age of 21 my symptoms started occuring again (seizures, dizziness, headaches). Doctors said surgery was not the answer, so they decided that laser therapy (gamma knife procedure) would be best. They found I have 5 AVMs. The one in the upper left hemisphere was large and one in the lower right hemisphere. The therapy was performed with 8 doctors present. Everything was well. Approximately 6 months later, the left hemisphere of the brain got irritated and swollen therefore interrupting my nervous system and causing me to suffer from a stroke. Mind you, I was only 21 yrs old and the thought of a stroke didn't even come to mind or even mentioned by the doctors as a side effect. The stroke resulted in a disability of the right side of my nervous system. Was placed in the hospital for two weeks and all the doctors told me was that I will always walk with a 10% deficit. I used a cane for a couple of months and had physical therapy. I now walk with a limp without the cane, toes & ankles are partially paralyzed, I suffer from backaches every day of my life and have been taking Dilantin ever since. I haven't had a seizure since 1998 which I'm very thankful for. I am now 26 yrs old, working on my BA in psychology and thinking about starting a family. Doctors say that it's not a good idea because I'm on Dilantin and it's not safe. Can anyone relate?

     
    Old 08-29-2003, 12:13 PM   #7
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    Hello Mary! Any type of illness or disorder is bad, but when we are diagnosed with AVMs of the brain, we don't know what's going to happen next. And from my experience, doctors can't really do anything to help us. I know that this disorder is hereditary, but I'm the only one in my family who suffers from this. I don't have any children. I just got married, 4 months ago, and we are planning to have children, but the thought of passing this on to my children scares me. Do you have children of your own? If so, did they inherit this disorder? It's great that you look at the world in a possitive manner, I do the same. That's the only way to survive a happy life!

     
    Old 09-02-2003, 10:42 AM   #8
    Sue B
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    Hi Everyone! I am thrilled to have found this bulletin board! It is so helpful to hear from all of you regarding this puzzling condition. I have three daughters, all teenagers now, who were born with cavernous hemangioma's of the brain. The older two had surgery at very young ages to remove the lesions. The surgeries were successful and the girls have been stable. My youngest daughter had multiple lesions and she hemorrhaged deep in the brainstem at 9 months old. She, although inoperable, did recover fully and has also been stable since then. We have seen many different doctors and there hasn't been a firm answer as to wether the girls would pass these on to their children should they decide to do so. It is evident in our case that the lesions presented themselves in a more severe location and greater number with each child. My husband and I do not have anything like this, however, we found that my father-in-law did have them as they contributed to his death at the age of 75. One geneticist told us that both parents had to carry the gene that caused these lesions in order for the chid to be born with them. I wish you all the best.

    Thanks!

     
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