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Old 10-17-2002, 08:29 PM   #1
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Post Arteriovenous Malformation (AVM)

For over a year (since I began having grand mal seizures) the Doctors have been telling me my seizures are due to a lesion on my brain. Today I learned that the lesion is possibly an AVM, or arteriolvenous malformation that I was born with. I will be scheduled for an angiogram, and a treatment plan will follow. I was told that an AVM can be real messy, like could cause a hemorrage or stroke etc. Does anyone have any info on AVM's? I'm in desperate need of support and answers from the group. Thank you, Kathy
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Old 10-17-2002, 10:39 PM   #2
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I wish I could help but Ive never even heard of AVM. I do wish you the best and that any treatment they give you goes very well. Good luck and keep us posted.

Brad.

 
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Old 10-18-2002, 03:18 AM   #3
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I guess that's part of the conditions they look for when they give you an MRI of the brain. That and a dye contrast shot. Been there, done that, not enough money on the planet to get me back into that @%$#!'n machine.

The noise and vibration didn't bother me. blna blna... thump thump thump. The blankin tube kept getting smaller. Thought I was going to fall flat on my face when I got out of it. I didn't know I was clausterphobic, phone booths and elevaters don't bother me but that thing sure did.

I guess I should've take the Valium the nurse offered me before hand. Oh well....

zat


 
Old 10-19-2002, 02:02 PM   #4
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Hi Guys,
Apparently, an AVM is a mess of blood vessels that form a mass. I don't know too much more, except that it could rupture or cause a stroke. Neither option sounds real fun. I'll keep you posted. Thanks for the support. Kathy
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Old 10-19-2002, 03:57 PM   #5
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Kathy-
I've been there & had one. I had my first seizure when I was 19. That's when I was introduced to the AVM. They had me on dilantin & tegratol, but the seizures continued. Migraines started. Finally, it ruptured & I had my first surgery. Of course it was a rush surgery & left me in a coma for 3 days. Memory was shot, seizures continued & I slowly recooperated. 2 yrs. later after the migraines were constant & Imitrex was doing nothing an MRI found that the first surgeon left part of my AVM. I went to Cincinnati & had the entire AVM removed. He did a great job & I was out of the hospital in less than a week.
I remain to have seizures & my last 2 big ones left me lacking oxygen. My newest Dr. wants me to get a VNS, but Keppra, which he recently put me on, is doing better than all the prior drugs I tried put together.
Get the surgeon who has years of experience & a GREAT reputation & get that AVM removed before it bursts.

Good Luck!

 
Old 10-19-2002, 10:18 PM   #6
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Hi,

I have a friend who found out she had an AVM approx. 9 years ago when she came into the ER with a anuerysm. The AVM ruptured, we thought she was going to die. She had sugury to relieve the pressure on her brain. She recovered fine, but was left with seizures which she controls now with a vagal nerve stimulator. would not play around with the AVM and I would definetely keep a close watch on it. Before my friends ruptured she said she had the worst headache of her life, she thought her head was going to explode. I hope you the best!!!

Michelle
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Old 10-20-2002, 07:03 AM   #7
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Michelle-
How long has your friend had a VNS? I ask because that is what my Dr. is pushing. As I've stated prior I had the AVM removed twice, but still have siezures. I'm on Keppra & dilantin. Last few years I have had a seizure about 5-6 times a year. How many times did your friend have before the VNS? This year my Dad had a hemmorhage & the stress caused 6+ seizures in 3 months. That is when they suggested the VNS. I have only had one minor "flop" since on Keppra in March this year, so I don't want to go through more slice & dice if un-necessary. Any info. would be appreciated.
One more thing. They left a "clip" in my head. I have never been able to have an MRI since then, but my new Neuro. thinks it will be possible for the VNS anyway.
Thanks!

 
Old 10-21-2002, 07:43 PM   #8
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Hi All, Thanks for the kind words, advice and info sharing. I go for a cerebral angiogram on 10/30. The Doc will be able to let me know where we're heading when he has those test results. Meanwhile, I finally know why I began to have seizures at age 47, and I'm relieved that I may be able to get the AVM repaired before something catostrophic (sp?) occurs. Will keep you posted. Kathy
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Old 10-31-2002, 08:47 PM   #9
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Hi Kathy,

I hope you are around soon as I am interested in how your Dr's visit went and what they said. I had an AVM removed a couple years back that caused me to have a gran mal seizure that sent me down a flight of stairs. I did some research and wanted to be able to answer the questions coming in so I just posted this article on the net. It is a very good article and explains the AVM very well. I hope it helps and my prayers are with you.




[This message has been edited by berol06 (edited 11-01-2002).]

 
Old 10-31-2002, 09:14 PM   #10
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Sorry, I did not realize that I could not post medical articles that are on a .net site. I will try and locate the .org site that i located them at originally.


 
Old 11-02-2002, 03:48 PM   #11
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Hi Friends,
I had my cerebral-angiogram, and I found out I don't have an AVM. I have an area of scar tissue from an old bleed. At some point I must have had a pretty serious head injury. Anyhow, it was good news and bad news. It's in an area that they can't do surgery on, so I will have to learn to live with the seizures (which began about 14 months ago when I was 47.) I'm working with a new Doc....a seizure specialist, and feel hopeful that we can work on the best seizure control possible. Thank you all for your concern....and information. Be well, Kathy
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Old 11-03-2002, 06:11 AM   #12
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You don't remember having a serious head injury that caused bleeding of the brain? Have you asked your parents? Perhaps you have low platelets which can cause blood to leak. Have they checked you for that? Best wishes.

 
Old 11-03-2002, 07:21 AM   #13
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Kathy-

I would most certainly say that is GOOD news. Trust me. http://www.healthboards.com/ubb/redface.gif)
Keep that Dr. of yours working until you find the right drugs. It won't hurt to ask about a VNS. Don't be patient & just smile & nod, assuming that these Dr.s are intelligent. Sometimes they have so many "chores" they forget why they walked in the door & who they're talking too.
Best wishes!!

Curse

 
Old 11-08-2002, 04:19 PM   #14
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Hi All,
I agree....first, because I AM fortunate not to have an AVM....second, because I finally have a seizure specialist that listens to me. What a concept eh!?! The only significant head injury that I am aware of is when I was five years old (I'm 48 now!)I fell out of a car. Although I was temporarily knocked out, my Doc doesn't think it was bad enough to have caused the lesion I have on my brain. He said I would have been unconscious for a few hours or days after this particular bleed. We may never know when it occurred.I had another seizure a few days ago, and am in the process of another med adjustment. If I have too many more side effects, my new (and much improved!!!) Doc will try another med. I feel confident that life will be much less confusing once this Doc gets me straightened out. I am sick of "thinking through mud!" izzy: Thanks for all the advice etc. Kathy
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