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Whooligun

AVM

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Just got my MRI results back and it appears that I have an AVM. I had to stop reading about it, because I'm getting pretty freaked out. I just thought I'd share...maybe other chronics like me out there should have MRIs done.  I'll post more another time when I'm not so bummed out.

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That sucks!!!! >:( Any idea about a repair for it? Depending on location and such I just wonder what the fix is.

Of course, that is why they do a MRI when doing a Neuro work-up.

Best of luck and keep us posted Wooli. I still love the shroom you did for class many months ago. :)

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Whooligun

No doubt you are overwhelmed right now.  Our thoughts are with you.

Everyone with CH or CH like symptoms should have a CT or MRI done.  Everyone.

Also, with any significant change in HA pattern, another scan should be considered.

The best fact sheet I can find is here:

http://www.ninds.nih.gov/disorders/avms/avms.htm

With links to many options and ideas.

Your doc is your best friend right now. 

If there is a bright side to this, they have found it and can deal with it.

Please keep us posted, when you are up to it.

PM if you want, we can talk.

Take care.

All the best

FG

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Thanks for the kind words everyone. I havent spoke with my doc yet, but I already have an appointment for an MRA tomorrow. The fact that that I just found out yesterday, and have another test worries me. It must be pretty serious. Ive been trying to do research, but I find myself getting sick to my stomach when I see things. I havent told my family or friends yet. My brother is leaving for his honeymoon in 2 days, I dont want him to be distracted. Its crazy...my family was always 100% healthy, we never had any issues to deal with...just a happy family. Then out of the blue my mother died in her sleep, 3 years later my 40 yr old sister got cancer and died within 6 months, leaving behind 4 young kids. Im super close with my Dad, and I dont know how the hell he would take this.

The hard part isnt the pain, or fear of death, its thinking about how everyone else i would leave behind would have to cope.

This sucks. Thanks for listening. Time to be strong again.

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Spot on Wooli.

We worry about what it will do to those we love. We take it the best we can and dish in out tailored to those we are talking to at the moment.

It is a helluva cross for someone of your age to bear. :'(

Don't worry about the MRA. It means they are focusing on your arteries. It may be serious, it may not. That is what they are trying to figure out.

While you don't yet want to bring this to the attention of your loved ones, when it is still up in the air, know that WE ARE HERE FOR YOU!

Hats off 8-)

Spiny

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Oh Whool -

Sorry man - take it easy - you will be okay. Like Spin said we are all here for you and support you.

I hope your tests today are positive and that you can take your focus and attention off it after you get good news. You will get good news - think positive buddy...My thoughts are with you.

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Thanks again. Have an MRA tonight. The doc talked to the neuro who works with colleagues nearby in a special AVM clinic right in the hospital. I think its the definitive centre of AVM in Canada, and my neuro knows the docs, so that is good. The fact that they want a second test 2 days after, leads me to believe I'll be flying to Toronto sooner rather than later.

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Thank god my wife is so great. We are already laughing about things. Shea sked me to take the dog for a walk and I told her I cant because I have an AVM. That has been our running joke for the last day or so, and I will be sure to keep using that to lighten the mood at a party we've had planned for a long time this weekend. I decided to share with everyone now, so there are no secrets, but humour cures all, which is what I need right now.

Thanks again for the support, and if you havent ruled out an AVM, please do...Ive lasted through 20 years of CH, 3 neuros, CAT scans, numerous pills, drugs, therapies, acupuncture, sleep study, diet changes, etc, etc, you all know the drill. I was shocked that the MRI showed something at all. I was doubly shocked that none of the "experts" thought of this anytime sooner.

Ive been chronic for almost 2 years now, and I think its because the AVM is spreading. Please talk to your doc and rule this out for yourselves. Most AVMs are found after its too late and they hemorrhage.

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I will hold out the best thoughts for you and that everything is good. You will be okay. If you can beat off a cluster you can beat anything. If you can deal with clusters there isn't much in this world in my opinion that we can't deal with. It has made us stronger than the average person when i comes to how we deal with pain and other issues in our lives and I know that you can handle this well. I have been reading about AVM - very interesting stuff. How old are you now?

You will pull through. i know it is the anxiety of the unknown and not knowing and the stress of it and the waiting - kind of like a boss saying to you on a friday that we need to have a talk on monday .....

I hold out hope for you buddy. Stay strong and think positive.

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Im 36. Have had headaches for 20 years. Its amazing 3 neuros have missed the AVM. Maybe we can spread the word about these things on here and CH.com. Im sure there is at least one other person out there who's nasty little AVM is causing their headaches. Most of the time AVMs arent caught until its too late.

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Thanks...MRA was much better than the MRI. I didnt take any meds for the MRI, because I wanted everything to show up. I get ultra sound & light sensitive during an attack, and the MRI machine was the loudest thing I have ever heard...for 25 minutes I was in pure agony. Hell I tell you! lol. Anyways, the MRA was quieter & shorter.

I should get the results Tuesday.

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Thanks...you guys are great. Talking about it always helps, especially when you guys seem generally interested. I appreciate that a lot. I havent told my family yet, so again...thanks.

Anyways...no word yet. Still waiting on the neuro's report. My family doc is great though and is on it. I almost made her cry when I broke down in front of her yesterday. I had some tough questions to ask, and the words did not want to come out. With situations like these, you have to hope for the best and plan for the worst. My wife and I are young, so I just want to make sure she's not left behind with a big mess of things.

Anyways. It sounds like Im depressed, but Im not. Im actually pretty confident. I feel good, have been taking extra pain meds because I can, said F.U. to my diet because I can (not overweight, was just brought up with a lot of bad eating habits), and am looking forward to having no headaches for the first time in 2 years when this is all said and done.  8-)

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My brain is not bleeding! Yay!

Talked to the neuro who told me "not to baby it" and "don't lose any sleep over it". It hasnt bled in 36 years, so its not like its gonna bleed overnight. Waiting for an appointment in Toronto to have some more tests and a consult with a specialist team, but Im not staring down the reaper like I thought I was. What a terrible feeling! I will still be facing lots of fun tests, possible radiation, and still possible brain surgery, but I feel a lot better today.

Thanks again for the kind words and messages. Some of you folks are pretty awesome people.

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GO Wooli!!!!!!! :D :D :D

So glad that things are not as bad as they originally sounded.

Sounds like your Neuro has a BRAIN!!! Big plus for you.

"not to baby it" and "don't lose any sleep over it" Great advice. 8-)

Thanks for the update. I was reading your am post and logged in to reply when your second post appeared. That made me very happy to read that one as a follow up.

Eat, drink, and be merry. 8-) Hug your wife and enjoy life, right?

All the Best to you Both

spiny

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Its been a while so I thought I'd throw out an update. Going to Toronto in a couple weeks for an angiogram (cant wait) and then a consult later in the day with the specialist, to find out the next step. Headaches have been constant. Upped the pain killers now I have no idea if its the headaches or rebounds from the pills.

Either way, Im hoping both will be over with soon. Im staying positive, not worrying too much about what they are going to tell me. And Ive been trying to ignore the complete moron who felt he had to tell me about his Dad who had an AVM and they gave him a 15% chance to survive. Gee thanks for telling me that. He then proceeded to tell me that his Dad is totally fine, except he cant blink and one side of his face droops. But you can hardly tell! Lol. Thanks buddy. Made my day hearing that one.

I hope everyone is having a great Summer and that the crazy weather isnt causing too much havoc with the CHs.

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