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Topic: Anyone With AVM? (Read 357 times) |
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Rosiet
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Anyone With AVM?
« on: May 26th, 2006, 1:54am » |
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Sorry New to the whole Chat & Post thing but have had Clustersssssssssssss........... for a long time. Could never even imagine that there was a place that people could understand what I was Going thru!!!! But shortly after I found this site I found out I had an AVM.
I Whet thru Brain Surbergy an Am Fine But still waiting to see if the clusters come back!!!!!!
Just wondering if anyone else has had a MRI and had found AVM and if so what they went thru and how they feel. I Hope one is not related to the other but still feel it is important to put it out there that I suffered for 20 years without an answer and if possibly this COULD be an answer for anyone else I want to help... Goood luck to you all. All I can say is I thought I was ALONE until I saw your webiste.... Then I wasnt.......
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JeffB
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Wide open till you see God, then brake
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Re: Anyone With AVM?
« Reply #1 on: May 26th, 2006, 7:32pm » |
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No AVM.
The Doctors x-rayed my head and found nothing in it.
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" It's been my experience that people who have no vices have very little virtues."
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Linda_Howell
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Hearing is one thing. Listening is another.
  
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Re: Anyone With AVM?
« Reply #2 on: May 26th, 2006, 7:55pm » |
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O.K. I'll bite. What is an AVN?
Quote:| All I can say is I thought I was ALONE until I saw your webiste.... Then I wasnt....... |
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THAT feeling is what all of us have said while crying onto our keyboards at finding this place.
You are amonst family here and no question is stupid.
WELCOME.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Redd
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Re: Anyone With AVM?
« Reply #3 on: May 26th, 2006, 7:58pm » |
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on May 26th, 2006, 7:55pm, Linda_Howell wrote:
O.K. I'll bite. What is an AVN?
Linda |
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ARTERIOVENOUS MALFORMATIONS
I googled it.
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Linda_Howell
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Hearing is one thing. Listening is another.
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Re: Anyone With AVM?
« Reply #4 on: May 26th, 2006, 8:03pm » |
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Thanks Pegg. I should have done that also. 
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Redd
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Re: Anyone With AVM?
« Reply #5 on: May 26th, 2006, 8:05pm » |
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When I saw it, I couldn't help but have two words pop into my mind.
Moya Moya
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Opus
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Re: Anyone With AVM?
« Reply #6 on: May 27th, 2006, 12:32am » |
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on May 26th, 2006, 8:05pm, Redd715 wrote:When I saw it, I couldn't help but have two words pop into my mind.
Moya Moya
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There apears to be a possible connection.
Rosiet,
DJ, the owner of this site has Moya Moya and here is his web site with info
Probably something to look into.
Opus/Paul
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Zed-Zed-nine plural-Zed alpha,
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Dave_Emond
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Re: Anyone With AVM?
« Reply #7 on: May 27th, 2006, 1:25am » |
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on May 26th, 2006, 1:54am, Rosiet wrote:| I Hope one is not related to the other but still feel it is important to put it out there that I suffered for 20 years without an answer and if possibly this COULD be an answer for anyone else I want to help... Goood luck to you all. |
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Many patients with AVMs have seizures or persistent headaches. If a rupture occurs, the patient almost always experiences an extreme headache. Cluster headache (CH) is an idiopathic cephalalgic syndrome, although several pathological processes have been described in association with this syndrome. We report two cases of cluster headache in hospitalized patients with middle cerebral artery dependent arteriovenous malformation (AVM). After surgical removal of the AVM the headache completely resolved, suggesting that complementary studies and treatment of the underlying aetiology may be indicated for secondary forms of cluster headache.
1. Thank you Rosiet for this post!
2. Hope you do indeed have had your last CH attack.
3. I haven't seen any connection with Moya Moya and AVM, if anyone has, please advise.
4. Seems it would be smart on our part to study AVM more closely, even if our MRI's don't show AVM, what might be the possibilities that the AVM surgical treatment could still stop the CH in others? Who wouldn't want to find out?
5. Maybe we should pass this on to OUCH and have a committee study into this in depth?
Thanks for your story Rosiet, I agree with you that we should look into this more, what do we have to lose when looking at every possible area that "COULD" be a possible answer.
OUCH ... What do you think?
Dave
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Obstacles are those frightful things we see when we take our minds off our goals.
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Lizzie2
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Re: Anyone With AVM?
« Reply #8 on: May 27th, 2006, 3:40am » |
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I don't have one, but check out the following link for more info on AVM for those who are curious!
http://headaches.about.com/od/essentialinfosheets/a/avm_info.htm
*Edited to add: Welcome Rosiet!!! Sorry you have to be here, but I'm glad that you found us!! Hugz 
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| « Last Edit: May 27th, 2006, 3:41am by Lizzie2 » |
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Rosiet
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Re: Anyone With AVM?
« Reply #9 on: Jun 28th, 2006, 12:23am » |
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Sorry dont go the computer much, but am happy that I had a reply!
Got A Phone Call Yesterday from A neighbor 2 houses down...... My Next Door Neighbor Had Been Talking to him and metioned Cluster Headaches!!!!! He had a freind who was SUFFERING!!!!! so they gave him my number and they told him I was CURED (ha ha ha )
I spoke with him and Tried to help anyway I could But told Him to have his friend call me if needed and I would help him. Really I thought he should try to seek the help of this web site.
I hope he comes to you and you help him!! Like I told my Neighbor Although I have not had a headache in alomost 6 months I am not sure I am Free And even if I am I will spend all my life trying to help ANYONE from spending ONE day in that pain.
Good Luck to You ALLLLLLL I feel you!!!!!!
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