Have just been faced with and overwhelming issue with my fiancé "Kate". She had a ruptured AVM October 22nd and sense has had it removed and is recovering with some speech and right side weakness. She is now one month pregnant which is a wonderful yet scary future for us. Over the last year and a half before the onset of her AVM she couldn’t conceive without medication, now we are faced with the question can she so soon after have a child and with all the medications is there a risk of birth…

Hey Every one,

I have had 3 times Angiogram and Embolize, But still i have head ache specially in the winter time,
when i inform my Doctor he recomended Angiogram , But when i asked him about the risk he said yes always there is a low Risk of bleeding,

so now am in Dilema , what can you advise me , to stay with headache and other risks or to face the risk of Angiogram,
please share me your Experience ,

Thank!
Michael

I was getting concerned when I've noticed myself forgetting things more and more!! I just now had an episode that is REALLY scary... either I have TOO much on my mind... OR my dr really needs to do something!! Here's what I just did...

I asked my husband what he wanted for dinner... decided I would reheat some speghetti sauce I made yesterday and we'd eat speghetti.... as I was doing that... I've been working on some scrapbooking so I went to the table and sat down and started working…

I have a LONG list of people that I want to thank for all their help/support while I was sick. I've never actually sat and compiled a list of the names, and now I wonder why. I want to document this so that I will never forget those who went the extra mile to help me when I really needed it.

1. Dr. Robert J. Singer. Dr. Singer, I believe you saved my life. You spent six long hours operating on my brain, and I am alive and well and able to talk about it because of the care you took…

Little did I know a year ago that Friday, February 10th, 2012 would mark the 1-year anniversary of the first day of the rest of my life ♥♥♥ after surviving a massive brain bleed! I am so very grateful and thankful for all of God's grace and Mercy that he has shown to me during this trial! While I am still waiting for the AVM-FREE report; I want to thank each and every one of you for being my lifeline over the past year when I needed you most!!!

/Michele

So I have been having headaches ever since I was an early teen-- I'm 21 now. I had a CAT scan at 15, and they told me I was a hypochondriac.

Fast forward 6 years, and my headaches were getting more frequent and more severe. I went for an MRI and my doctor found an AVM in my cerebellum. (We looked back at my CAT scan from when I was 15, and it was there too... but the doctors missed it..)

My doctor now, Dr. Berenstein, told me that radiation therapy was not an option because my AVM…

Well, I think its time to update everyone that has prayed, wished me well, or thought about me in the past few days...

Last Thursday I went into UT hospital for a very serious rare spinal cord disease that was very rapidly paralyzing me from the waist down..

I had an awesome neurosurgeon Dr. William Snider, who dove in to the challenge and successfully and delicately completed the challenge....

I was flat on my back for 48 hrs, and due to sit up for the first time last…

Dr. Waldron performed Merlin's angiogram on January 19th. It looks like there haven't been any bleeds, and maybe only one tiny aneurysm. The pictures were a bit scary, even though the news was (relatively) good and what we expected to hear. It looked like someone had spilled ink in a big puddle in the middle of the left side of her brain. This view made the damage look more extensive than it had in the MRI.

We went to see Dr. Kerr (a pediatric neurologist at Dell Children's) to get an…

My daughter Erin is suffering from terrible headaches, which we know are a part of all of this. However, my frustration starts with the Dr.s who refuse to give her any medication to help alleviate them because she is a college student! They seem to think she may sell them or have them stolen! I understand how some kids are these days but, if they have ever had a headache like my daughter has they would know that she would guard these med.s as if they were gold. Anyone who has these types of…

I just wanted to share some of the side effects that I have experienced. In the last day or so I have read about some of the effects others have had, and while it bothers me to know that people are having to go through this kind of thing, it makes me feel better to know that what I am experiencing is not out of the ordinary for people who have had AVM's.

The vision problems have been the worst. I was told by another member that this is due to the area of the brain in which my…

We had Elizabeth's pre-op appointment Monday and surgery is confirmed for next Friday. We will go in on Thursday for an angio/embolization and she will stay overnight either in ICU or a regular room depending on whether or not she can have the embolization. Dr. Grant gave her some good news, very little hair removal and dissolvable stitches instead of staples. She really liked he sound of that. They are going to go in through the back left of her skull to reach the AVM as there is a "clear"…

As I mentioned in my previous blog, I was pregnant when I had my hemorrhage. This is easily the best and most important part of my entire experience.

While I was in the University of Tennessee Medical Center, I learned that the child I was pregnant with was a boy. I was going to have a son :) In a matter of days I learned that, not only had my baby survived the hemorrhage, but that he was no longer my baby, he was now MY SON.

My new OBGYN, Dr. Hourigan out of BRMC in Corbin,…

I just want to start by saying that I am extremely excited to have come across this site. I have really enjoyed reading some of the posts, what little chatting I have done, and finding a lot of useful information throughout. I am the only person that I know to have experienced an AVM, although my paternal uncle has had an aneurysm. It is hard having something like that that affects your life so completely, essentially turns it upside down, and not having anyone who can understand…

My Recovery....I haven't needed anything in my recovery the past 5 months. Here's the journey. Ill tell the easy breezy version as we know the hardship and struggles, the stress and the tears that come on this road of AVM. The best way to get somewhere is to just start going. I woke up 7 days after my 14 hour cranionomy and told my sister " Ok. It's time to go.". I got out of bed and walked the floor of the ICU at University of Michigan- Ann Arbor. It is the best. I ate whatever my sister…

Recently I have done MRI on the whole back, my meuro confirmed it is located from the small of the back and up to the chest areas along my spine. I started doing gymnastics and I see it really helps my body and I feel myself good now.

Will not give it up as these movements keep me alive and in good mood !

Just to see the other Doctor`s opinion am going to send couple of MRI CDs to Swiss hospitals, let`s see what they advise me.

All the best to everyone and stay healthy…

I used to be a nurse but I no longer even look at medical things. I am new to this site and have a nagging question. I had my AVM coiled and removed 12 years ago but I know nothing about what vessels. I have not been followed by a doctor for 10 years regarding this and have been told they have been known to reoccur. I only have a Internal Med doctor that refills my anti-seizure meds. Should I be concerned especially in view of increasing number of headaches even if they are mild.

I haven't been on here as much as I'd like, mostly because I tend to think more about my AVM than I'd like being on here. I have been thinking of possibly trying to see if I can treat my AVM this year or at least get more information on it, as my anxiety level has been through the roof lately. As I am now getting older every day is a struggle if this will be my last day that I'll be normal. I go back and forth and some days I'm confident that I will not have a bleed and tell myself I'll be…

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enjoy....

http://youtu.be/3CGbyfisdaY

I’m the co-founder of this site and help run a group called Ben’s Friends (www.BensFriends.org) that builds patient support networks for people with rare conditions. I do this cause I love it. I’ve met so many wonderful friends on this journey.

It all started when my buddy, Ben Munoz, had a stroke caused by a rare condition called AVM. Ben survived but during recovery he couldn’t find a support group…so he started one called…