Beyond Scared

I've had my AVM for about 3 years now. I've had one embilization done and haven't been able to continue them as I've been pregnant twice in the last 3 years (all wonderful surprises). With this pregnancy it seems my AVM has grown (don't know exact measurements off the top of my head, no pun intended lol) and about 2 weeks after I'm due to have this baby I am supposed to go in for another angiogram to find out more treatment options and possible surgery.

I'm 3 months away from having this baby and the closer it gets the more frightened I become. I've been lucky so far and haven't had any complications with it aside from massive headaches and what I just found out is bruit (I believe that's the name for the whooshing sound I hear). I know my family worries for me, but some days it's like they just ignore the fact that there's this ticking time bomb sitting inside my head. It's in the front left lobe of my brain and it worries me. According to the neurologist I've been seeing it's also affecting my personality (making me more aggressive and prone to anger more quickly). I feel terribly alone most days. I can't expect my friends and family to know what I'm going through as most of them don't even know what an AVM is. I try and explain and I get treated like I'm exaggerating things or being overly dramatic. I wish I could say that's the case.

I just need a friend I suppose. I have a lot of stuff coming in the next few months and I'm terrified. I am scared to do this without some kind of understanding from someone who gets it. I know my family and friends try, but unless you've been through it, this is just one of those things you can't understand. If anyone has any advice on what to expect as far as surgery goes and what the outcome may be (I know it varies from person to person) I would be terribly grateful.

Who is your doctor?

The doctor I'm seeing now is named Nanda, I like him so far as he's answered any question I have had and given me any and all information based on what he's seen from the MRI I had done a couple of months ago. More in depth discussion is needed after the angiogram though. I was originally diagnosed in Savannah GA, but have since moved back home to Missouri. I was told then 5-6 embolization treatments and then surgery. Don't know yet if that's going to be the same scenario!

Hi,
I was just diagnosed with AVM 5 months ago after a stroke. I had undergone two embolization and one Gamma knife treatments. I also have the feeling of having " a ticking time bomb" (as you described it). I am graduate student studying neurodegenerative diseases.
Personally, after researching a lot on AVM and talking to my neurosurgeons about this, I feel an embolization will be a good idea in your situation. During the pregnancy period you want to avoid the possibility of a stroke (due to the location of AVM, a stroke can cause changes in personality/). But embolization is associated with post-op headaches and drastically increases risk of seizures because of sudden changes of blood flow in the brain. But medications help in reducing both the side effects.
Hope this helps,
Abhinav

I was 13 weeks pregnant with my second baby when my AVM ruptured. I had 2 embos and the crani before I was 6 months pregnant. The baby is totally OK. Like you, I had no complications with my first pregnancy just really intense headaches and migraines my OB/GYN said were tension headaches. Boy was he wrong!
They told me I'd get about 3 embos and then "see from there." But the second embo was a complete fail. The surgeon said the AVM was a lot larger than expected and that it ran a lot deeper than he anticipated. He couldn't reach one of the feeding arteries. They said that there was no risks associated with embolizations and pregnancy, at least no risks greater than anyone else having an embo done. The only uncertainty was the glue. There's no way for them to tell, as of yet, if the glue is hazardous to a fetus.
My neurosurgeon said that no one knows for sure if an AVM can be the cause of personality "imperfections" even though it's more likely possible than not. Before my AVM bled I had emotional issues but more when I was a teenager. The older I got the more I learned to control it. But now, a year after the bleed and the craniotomy, my anger is at a new level and it's a lot harder to learn to control it in my late 20's than it was when I was a teen LOL. What kind of treatment are you leaning towards? GK or craniotomy? The thing I noticed with both is that patients tend to become more emotional and gain a lower tolerance for idiotic people yet seem to gain a larger audience of idiots when going through this LOL Unfortunately, you have to be the one to learn to be patient for them rather than the other way around, the way it should be. Either families are insensitive to us AVMer's or are waaay too empathetic and tend to get on your nerves. I have yet to decide which is worse LOL.

I was originally diagnosed in GA as previously stated in a response, and I was told then 5-6 embos and then the surgery. As of now I'm not entirely sure what the Neurosurgeon is thinking. I think he's wanting to wait and discuss in depth options after I have this baby as NO ONE is willing to mess with it while I'm pregnant. I guess maybe they think the risk is higher since this is my third one and I'm now 30. I had my first daughter at 25 and hadn't yet been diagnosed with my AVM, so I had her naturally and luckily came out alright. I was due to have a c-section with my second daughter, but the nurses, doctors and receptionists at my hospital and ob office couldn't seem to get their crap together to get the necessary paperwork needed and I ended up having her naturally as well. I think, however, something got screwed up with my second daughter (I'd been diagnosed and had one embo by that point which is Nov of 2010) and I'm under the impression that's why they won't mess with it now. So they have me scheduled for another angiogram just a matter of weeks after this baby is due to be born.

As far as what I would like to have done, as long as the risks don't outweigh the positives of the surgery I would like to have that done, as I cannot afford to keep doing treatments! At 50k a pop that's just TOO much and I want to insure we have the money to take care of our kids. I suppose in the long run though, whichever is going to be safest route is the one I'm willing to go with. As far as idiots, sadly I'm surrounded by them. I just lost my mom last month and her husband is the biggest idiot I've ever met.... he's not helping my situation any as the more I find out about how he treated my mom and the things he's done, it makes my blood boil moreso than ever. So I've managed to keep my temper in check thus far. My only concern is my kids as there are days no matter HOW hard I try and control it, it just doesn't happen. I have to just put my youngest somewhere safe and walk away for however long it takes for it to settle. I will NEVER hurt my children, but the anger I feel at times is frightening. So even though it's possible it's NOT connected, I still hold a little hope that by getting this AVM thing corrected or eradicated I can bring some of that anger down and get it under control again :)

If you haven't already, join the sub-group http://www.avmsurvivors.org/group/pregnancyandavm. I'm sure they will totally understand what you are going through! Stay Strong an Stay Positive!

There is like no one ever on the pregnancy group (no offense Louisa). I don't think that group is a lot of help because there really aren't too many people that are pregnant and know they have an avm. Most doctors recommend putting off pregnancy until the avm is treated.
I'm honestly surprised that no one wants to treat your avm while you're pregnant. Like I said, I had 2 embs and the crani before I was even 6 months pregnant. BUT, my situation had already reached a dangerous point as I had a pretty serious bleed and am now with more than just "mild weakness" on my left side. I haven't moved those toes in over a year. I was FORCED to be realistic about the risks I could face. They said the embos (that were supposed to be 3 but were only 1.5 LOL) might be enough to keep my pregnancy safe but if I had another bleed, most likely I'd lose the baby. The risk was too great. They said I could do GK while pregnant but obviously my surgeon strongly recommended I pick one of the few other options. It wasn't recommended that I wait until I had the baby because of the second bleed risk. So they said craniotomy was the best option. I had to decide quite quickly and came to the conclusion that I needed the crani and that I wanted it as soon as he was available. I won't put on here why I made that choice because it's kind of...morbid I guess.
Anyway, my surgeon is a uniformed neurosurgeon. He works for the airforce. My interventional radiologist is as well. They were the only two that weren't "afraid" to touch me and seemed to have little worry about the baby, making me feel pretty safe with my decision to go ahead with the crani.
As for your kids.....like any parent must learn, it's better to walk away angry than to loom over them yelling and screaming. Your walking away, in my own opinion, is probably the best thing you can do for them and you might as well train yourself with that now because surgery will not correct your temper....just read a few stories on here. Anger and depression are extremely common traits with us AVMer's (treated or not). I myself am going to have to start ant-depressants because my anger and depression is starting to affect my relationship with my oldest son (he's 4). He thinks I hate him so on my "good days" I make sure I spend every minute of my "good behavior" telling him how proud I am of him and how much I love him. It's hugs and kisses all around. He's just a kid, he doesn't understand. I don't "parent" him according to my husband. I spend a lot of time avoiding him on my "bad days." I really don't want to yell at him for no reason or for him to think that my crying is normal. It's not something I want him to pick up.
I'm sorry about your mom's former husband. Trust me when I say, I know how hard it is when you discover people thought "keeping secrets" from you was protecting you and really.....it's not protecting anyone. It just makes the anger worse when you find out everything.

I think the main reason they don't want to touch me until after the baby is because so far I've been REALLY lucky and not had anything serious happen with it yet. The worst I've had have been killer migraines, which is how I was diagnosed in the first place. I think they're afraid of going in there (especially with the increased blood flow of pregnancy) and mess with it. Kind of an "if it's not broke don't fix it" kind of thing for the moment. That's my best guess for the time being. I'm not entirely sure (as they neurosurgeon I'm seeing now doesn't have the initial MRI results from when I was diagnosed) whether it's grown or not but the way I am understanding it, it has. Perhaps too much of a risk right this second. Not to mention I'm 6 months along already.

"ticking time bomb sitting inside my head" -- i totally agree to this. good luck!

i hope you give birth to a healthy baby. god bless you! :)