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        New Message Board Archives >> 2006 General Board Posts >> Anyone With AVM?
        
(Message started by: Rosiet on May 26^th, 2006, 1:54am)

Title: Anyone With AVM?
Post by Rosiet on May 26^th, 2006, 1:54am

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.......

Title: Re: Anyone With AVM?
Post by JeffB on May 26^th, 2006, 7:32pm

No AVM.

The Doctors x-rayed my head and found nothing in it.

Title: Re: Anyone With AVM?
Post by Linda_Howell on May 26^th, 2006, 7:55pm

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.......

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

Title: Re: Anyone With AVM?
Post by Redd715 on May 26^th, 2006, 7:58pm

on 05/26/06 at 19:55:08, Linda_Howell wrote:

O.K. I'll bite. What is an AVN?

Linda

ARTERIOVENOUS MALFORMATIONS

I googled it.

Title: Re: Anyone With AVM?
Post by Linda_Howell on May 26^th, 2006, 8:03pm

Thanks Pegg. I should have done that also. ::)

Linda

Title: Re: Anyone With AVM?
Post by Redd715 on May 26^th, 2006, 8:05pm

When I saw it, I couldn't help but have two words pop into my mind.

Moya Moya

:-/

Title: Re: Anyone With AVM?
Post by Opus on May 27^th, 2006, 12:32am

on 05/26/06 at 20:05:39, Redd715 wrote:

When I saw it, I couldn't help but have two words pop into my mind.

Moya Moya

:-/

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 (http://www.moyamoya.com/)

Probably something to look into.

Opus/Paul

Title: Re: Anyone With AVM?
Post by Dave_Emond on May 27^th, 2006, 1:25am

on 05/26/06 at 01:54:12, 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.

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

Title: Re: Anyone With AVM?
Post by Lizzie2 on May 27^th, 2006, 3:40am

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 :)

Title: Re: Anyone With AVM?
Post by Rosiet on Jun 28^th, 2006, 12:23am

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!!!!!!