Hi all, I’m new here, I’m Amity and found out I have an AVM 6 weeks after the birth of my 2nd child born in April of 2014 through a seizure that landed me in the hospital for a week. Now, 3 years later I have yet to get the AVM treated or removed. I’ve been on anti-seizure medication since, but nothing else.
I know I need to get this out of my head, and timing will never line up perfectly, but it’s also been one thing after another, and with a husband finishing school, and two young children, I haven’t been able to see a point where things can be about me. I mean what mom does?
We were going to start treatments in January, but my husband got laid off in December so that killed that, now, again, he’s going back to school to finally finish his degree so it seems like it will be another 2 years before I get this thing out of my head, a year for school, a year for him to be in a job and earn FMLA.
As a child I was sick a lot and had a lot of tests done, MRIs, etc, I’m bitter as to why this wasn’t found sooner. Why is my life being put on hold because of this and I can never find anyone that truly understands how I feel. I’m annoyed and have held off joining this group, because am I a survivor? Or am I someone who is being stupid because I know it’s there and is putting off getting it removed?
Hi Amity Welcome x
You are what I would typically call a survivor ! You take everything that life throws at you and get on with it despite how you are feeling! Sometimes lifes priorities make decisions for us and what we need drops down the list a bit. Its ok to be bitter or angry because without a bit of that fight in us all we may not move forward. There are so many people on here that “just know” exactly how you are feeling and what you are going through. So hopefully you can reach out to them.
I have only been diagnosed with a spinal AVM around 15months ago after having numerous symptoms for years. I have a “comparison” MRI with contrast on friday. Unfortunately this is only to look for change and give me some sort of idea of a prognosis because its unoperable. I get angry, I cry, I get so worried. But I do try to have some sort of positivity because sometimes thats what keeps me going. Hope you find some comfort and support on this site. Xx
Hello and welcome Amity, happy to have you, so glad you joined,. Yes!! You are a survivor and obviously a very strong person, pre/ post surgery these are the questions we all seek answers for, it is very frustrating we can’t get answers, only advise and feed back from other avm’ers, we seem to be only ones who get it, because we got it, this site has some awesome people, just reach out and ask questions, you’ll be surprised at the result,your not alone, we are all here for each other ,. Only you know what’s best for you, thinking of you and wish you all the best, god bless, take care
I read your post and I understand your feelings about your AVM not being discovered until now in spite of being sick when you were younger.
I have been through the same, I had other conditions that masked it but were certainly symptoms. I was treated as worried well… it’s so frustrating and the language around treatment pre crisis are words like “elective surgery” when it’s anything but. It’s acting in a timely manner to prevent a crisis happening where treatment is given that you have no choice in.
Do not get bitter, this is a waste of energy and it may cloud your vision. It sounds like you have enough on your plate nurturing the people around you. Anger is a useful energy but use it constructively to research your possible treatments and how you can make things work for you to help you navigate the shortest route through how you decide to act and help yourself make positive descisions that you have the information to be confident in. I’m not sure if you have time for reading but when I was deciding treatment I read a lot of information- medical reports articles in Nature, Scientific American and I also read a book called Saturday by Ian McEwan- it’s about the day in the life of a Neurosurgeon based on a real life surgeon who I originally sought treatment with but works at the hospital in London I was treated at. It helped me so much, I’m sure you can find it as an audio book. Same with The Doors of Perception by Aldous Huxley- this is a funny one but it explains a lot about the human brain in a way- it has a bit of a reputation this book but if you think of it as a description of seeing how the brain sees and reacts- it’s good. I perceived my migraine aura completely differently. I hope that helps you too…
We Moms totally understand why you are making the decisions you are. Eventually you will have to put you first. Keep us updated on how things are going with you. Rant to us that is why we are here.
Hi Amity, I suffered from migraines my whole life and had serious issues if I over did it with exercise (running long distance would get headache then go super hot then vomit) I had a seizure and was admitted to hospital after that for tests that included an MRI and ECG etc… all tests went fine and I was given the all clear. I asked about this after my AVM ruptured, why was this not found earlier with previous tests and symptoms etc… I was told that my AVM would only show in a angiogram scan. you are in no way stupid and these feelings are normal, Feeling of helplessness and of your hope falling away. timing is a tough thing for me it was the waiting to have it treated after it had burst, There is a greater chance of another and this frightened me, But through loads of positive attitude I convinced myself that I would be fine no matter what, And I was. you too will be fine, I at the time had 3 young boys and also thought of them often late at night feeling like crying, but each time I shook it off and told myself everything’s going to be fine. Keep your chin up, sure things are tough but fight it all the way this is your life, keep fighting till you cant any longer . Take care
And yes you are very much a survivor, I was told that pregnancy presented significant issues to women with avms especially in later stages of pregnancy. You have gotten through two pregnancies and have two children, so you have defied some odds there! That’s a massive positive. I have been pregnant and these pregnancies failed but I had significant aural migraines that had speach slurring, visual disturbance and limb numbness with them now it all makes sense but then it was scary and grim. You are young and I’m guessing you have what your doctors perceive as reasonable health- although you might not feel like it. The treatments available now are much more advanced than they were , 20, 10 or even 5 years ago. And above all you’re still here!! Be kind to yourself and kind to the people that love you- that was certainly what I repeated inside. Keep on keeping on!
Hi Amity. No, you are not stupid. You are a WOMAN. You are responsible for so much in your home, and like many of us, tend to leave your health at the bottom of the list. Talk to your neurologist and ask what they recommend. But, don’t settle. Also, try and get a second opinion. One doctor wanted to go in and perform an embolization on my baby girl, a second doctor told me that he would not recommended it, due to the severity of my daughter’s condition. Meditate on it and the answer will come to you. Meanwhile love your family with all that is in you and create memories for children that will never be forgotten. Things will work out. Just trust and believe in that.
They found mine during my MRI post seizure… or found “something” that they needed to look at closer and did an angiogram the following day. So it must be technology based also as what could be found and what couldn’t be found from scans when I was younger to what could be found 3 years ago.
I will be getting a 2nd opinion for sure after cousin having issues at our local hospital and getting overlooked until he was on life support. He’s in OT now and getting better, but it definitely alters my view of the neuro center here.
Thank you everyone for the warm welcome. It means a lot to have people that understand me more and knowing I’m not alone.
I agree that it is important to get another neurologist’s opinion before you have surgery. I also understand that you that you have major commitments to your husband and children. Honestly, I don’t think you can consider yourself to be a “survivor” just because you had a seizure. But it could be that if you don’t have the AVM removed you could have a rupture or an aneurism - a stroke. And then your life would be changed for the worse - by a lot. You’d barely be able to care for yourself and your husband might have to drop out of school to take care of you and the kids. I don’t think you’re stupid for feeling frustrated about your situation. But I do think that if the AVM ruptured you WOULD have feelings of regret about not having treated it ASAP. Don’t feel guilty about putting your health first. Get friends and relatives to help with the family while you’re in the hospital for the surgery. It is precisely BECAUSE you need to be there for your husband and kids that you need to get this AVM removed. You want to get this done so you won’t ever become a “survivor.” Don’t put it off. I didn’t have have any warning before my AVM ruptured. You’re lucky you got a warning. Please, if you doctors advise you to get the surgery don’t delay.
I know the feeling I’ve put so much off due to finances and in the end, it ended up far worse than it would have if I would have taken care of it in the first place… I truly hope you find the time to care for yourself! Your children and husband need you therefore you have to take care of yourself for them! I understand it’s tough and you feel like there isn’t time but keep trying dear!
Hi! Frankly, I don’t think it’s a matter of your being “stupid”, I just think it’s a matter of “not knowing” what to do… An AVM in your brain is a very serious medical condition and if it were me, I’d seek a second opinion with another doctor that specializes in the treatment of AVM’s of the brain. I had no idea I had an AVM in my brain until I was 43 years old and it ruptured. The fact that you now know about it is actually “a gift” because you can now DO something about it before it harms you. If it were me, I wouldn’t put off treatment. I’d seek a second opinion and find out what your options are. Consider it a gift that you now know about the AVM… knowledge is power. Today, there are so many things they can do to treat AVM’s in the brain, even if they’re “inoperable”… but I think the most important place to start is to work with a doctor that you trust and that specializes in the treatment of AVM’s in the brain. Good luck to you and I’m so glad that you found this website - it’s a breadth of information and support .
Michele is making lots of good points here.
Welcome to great support here on AVM Survivor Network! @ 1980, when I was 18 years old, I got my 1st gran mal siezure, and found I had a huge AVM up in my brain. I felt SO ALONE, because back then, I found NO ONE that had what I had. Anyway, because it was a quite new problem in the medical world, there were not too many ways to handle/treat AVM’s very successfully! So, I simply waited and waited for about a decade, to see if any neurosurgeon would even tackle on my large AVM. I looked around the USA for the right neurosurgeon, and when I met Dr. Robert Spetzler, in Phonix, Arizona, (Barrowlogical Neuro Institute/St Joseph Hospital), I felt HE was the one for me. I am not sure though, now, if he is still practicing or maybe he is retired. Anyway, in 1990, I took the plunge and decided on brain surgery. I HAD to, because in my 20’s, year by year, I got worse and worse seizures. At 29 I was ready, and elected to have the brain surgery. Recovery was long and hard, but what kept me going was:
‘Power From WITHIN’, and the ‘Strength From Above’, recovery IS possible. What I, also, realized, is that I will NEVER stop recovering. I always want to get better and better and better. ‘Positive Thinking’ is, also, another key to recovery success!
May God be with you in your AVM future decisions!
Lisa A. Stuckel
PS I can not say I am ‘cured’ w/ my AVM problem, but I am @95% cured.
Lisa, very nice posting, well said and really helpful/ encouraging to all here, thank you and God bless!!
Electrician, you are ever so welcome! Thank you fro your words, as well.
In this gorgeous ‘2nd Life’ of mine, I KNOW I am here to help OTHERS now.
I am always thrilled to get any AVM emails. I am, though, a slacker with all of my emails, so the majority of the time, I am 2,3,4 days behind. I am not as hip as another computer genius!
Lisa (Box Barge)
Shoot, E, I see a couple of errors on this last email from me to you! The NUNS, in my Catholic grade school, would try to scold me somehow, now, if they knew where I lived! Ha ha.