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AVM Survivors Network

What a fool

I did really hope that it wasn't true. That I could be OK.
That there was hope.

Now, I don't know anymore.

Life is precious. But it's only when we are about to come to the conclusion that we are close to loosing it, that we really understand just how precious it is. And that's really sad.

I love life. But I don't love what humans has done with it. With the planet.

Yes, I just rabble on now. Cause I'm just so sad right now and there's so many thoughts going on inside of my head.

And surely I'm overreacting. Cause there could be worse. I have a big AVM in my brain, yes, but it hasn't ruptured yet atleast.

But the most annoying part is to not know.

To not know how dangerous it actually is. Could it rupture now? In a year? In ten years? Can I have kids? Should i even bother finding myself a husband? Or should I just enjoy life the last years of my life? Stop working and travel to see most of the beauty in this world.

I DON'T KNOW. The doctors seems not to know.

Ok, I know that no one knows when their days has come and it's their time to pass on to the (hopefully) next life or heaven or whatever. But what I know is that there's not only the chance to be hit by a car tomorrow, or get shot or fall and die. There's also a chance of me dying because of my stupid veins in the excellent position in my brain.

I don't know. I just wanted to print some thoughts while crying over the last MRI pictures of my brain.

I went to this optional doctor (sort of acupuncture) and thought that it would help. She said it herself, you're going to be OK. I stopped taking my epilepsy medication and I was living my life as usual again. I was going to be healthy again.

That was a lie. I live in a big lie. I'm Mia and I have a large AVM in my brain. Just stop denying it! It will not disappear!

You, whoever that reads this. I hope mankind will all die except humans with a big heart, caretakers of the world, the nature and all animals. That's my wish.

Good night...

1 Like

Hi Mia:) i am new to the avm site...i dont know much about avms but i am learning quickly since my first seizures in july....they pushed for gamma knife treatment on Cct 9....we will not know any differences for at least 6months. I will be seeing my neurologist on oct 22 for followup to discuss on meds for the seizures.... I hate them they make me feel like I am in slow motion....I can totally relate to what you are going thru... helpless and out of control! waiting for the other shoe to drop.... It is much better for us to vent than to keep it all bundled up.... I like this avm site.... we can talk to others about what we are going thru :)
I will try to keep positive and not give into the negative world,,,, PLZ try also :)

Hi Mia, I saw your post and had to respond. I too am new to this website. I don’t know the status of your AVM but I also want you to know that I am 52, have an uruptured AVM in my left frontal/parietal lobe that is 3.5 cm and I too was told no surgery and no treatment. I have had seizures and am on meds for this. My point is I have been living with this for all these years and have two wonderful children and a wonderful husband. I did not know of my diagnosis until last month. You are so young and have so much to look forward to, please don’t deprive yourself of these wonderful moments in life. None of us know what our future holds, please stay positive, we are here for your support!

I hope you took yourself off the meds under the direction of a doctor. Abruptly stopping can cause other complications. As far as hope…as long as you are breathing…there is hope.

Hej Mia, Jag är så ledsen för din skull. Min Simon var på Sahlgrenska Sjukhuset för att genomgå en embolisering i måndags men de avbröt och gick ur eftersom det var för stor risk att skada friska kärl. Vi står därmed också på ruta ett i allt det här och nu väntar flera utredningar för att se om det finns något annat att göra.
Som sagt, jag är så ledsen för din skull men kan också bara säga att vi måste fortsätta leva och tro att på något sätt finns det en mening med allt och att det på något sätt kommer att ordna sig. Jag skickar dig en styrkekram och om det är någon tröst finns du med i min kvällbön. Kramar Cecilia

I’m in the USA; my AVM ruptured once when I was in the womb and 14 more times, from 1980-1987.

After my craniotomy, several years after, mind you, I was able to re-strengthen my short-term memory, using voice recognition software. Please contact me and I’ll fill you in how I did it.

I used a computer/laptop, Microsoft Word, Dragon NaturallySpeaking! and a Sony digital recorder. It was more than 10 years after my lifesaving craniotomy and I was still able to have my mind and Brain resurge.

Please contact me, at: ■■■■■■■■■■■■■■■■■■■■■■ and/or www.Facebook.com/mattramzzz1971

Mia,Be strong. What you wrote is very beautiful. You know it’s there and it hasn’t ruptured. There is always hope. I was 53 when mine ruptured. I was in ICU for two months. In the meanwhile I had a pulmonary embolism, a craineotomy, a second bleed in surgery that left me paralyzed on my left side prior release. I told my bf if anything else happens, I don’t want to know. It was very hard and yet, I don’t remember any of it. Only what I have been told. I came home unable to walk. I told my bf, get me on my feet, and he did. I hit year 2 come Dec. I have progressed to using only a cane when I am outside. Without hope, well, I wouldn’t be where I am now. Only God knows when our last day on this earth will be. As long as you have a breath in your body, you have one more day to fight to live. Keep that faith Mia. You will be in my prayers. Pat

Hi Mia

I feel the same way when I leave for work every morning I'm so scared my partners AVM will rupture when I'm at work.Its a hard road to toll.My thoughts with you so glad i have found this is be able to talk to people going thru the same thing

Take care Rose

Thank you all you beautiful souls!
Thank you for replying to me when I needed it.

Thank you for being there when I lost faith.

Sending so much love to you and I hope you youre all good!

Today I’m way stronger, both in my body and in my beliefs. Thanks to this AVM I started to live life. 100%! (After the breakdown). Now I see it as a blessings.

I love you all!

2 Likes

Hello,Mia
I’m grateful for creating a topic with such a “beautiful” name. Judging by what you described, I am also a fool, because I really hope for this treatment -Article about the Stem cell clinical trials going on for Stroke and TBI in USA
In your message you seemed to put all my thoughts together. Thank you very much :slight_smile:

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Have you had treatment, Mia, or have you started looking at life differently? (Or both, perhaps?) Will you tell us how things are going for you?

Thanks for popping in and adding a burst of sunshine to my day!

Seenie from ModSupport

Hey,

I’m glad I could turn this negative thread around and I’m at the same time understanding and thankful for myself, that angry girl who wrote this 5 years ago…

Yes, both treatment and looking at life differently!
I’ve had radiation therapy, although I don’t know if it was100% successful, actually it’s 3 years since I did it and I will soon do the last checkup and MRI. Wish me luck!

But the main thing is that I just started to live life 100%. Like there was nothing to wait for. And that helped me and made me find my own happiness :smile:
I could’ve continued worrying, living at home and going to my old job. But I didn’t. I knew I had to turn things around to really heal.

I started to travel (as I mentioned, cause that’s something I always wanted to do), I went to yoga retreats, life coach retreats, I started to eat healthy, plant based food. I started to listen to my body and got to know my true self. And I’m healthier than ever! We all have our ups and downs in life, of course.
But… the world is my playground. And I realised that I don’t want the “regular life”. Cause it’s not sustainable nor healthy for a human and the environment has to pay for it. We have to get back to basics, back to community. SO thankful for this community, btw. For everyone with AVM to get together to support and help each other out. I think that’s something which is needed in this world where people get more and more disconnected from nature and community…

:slightly_smiling_face:

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Mia! You’re back! I’m so glad that you stopped by again. I was particularly touched by something you said:

We have to get back to basics, back to community. SO thankful for this community, btw. For everyone with AVM to get together to support and help each other out. I think that’s something which is needed in this world where people get more and more disconnected from nature and community…

You have so much to offer to others having difficulty in this community and goodness knows there are lots here who are going through what you’ve gone through. Please read some of the threads that are going, and reach out to share some of the great wisdom that you’ve gained.

Like you say, we have to get back to community. And this is one community where we can make very special connections indeed.

Seenie from ModSupport

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Hi Mia, I can understand your worries and what you’re going through, especially when you know that you have an AVM in your brain that could rupture anytime. All I can say is try not to think too much about it an just live your life, th more you worry about it, the more you will cause it to rupture since worrying causes your blood pressure to increase. Did the doctors tell you hat grade your AVM is on the Spetzler martin grade? If you do you can tell me about it, I had a grade 4 AVM back in 2016 but the surgeons took the risk of removing it via craniotomy and thankfully it was successful and i recover pretty quick. Just because you currently have an AVM in your brain doesn’t mean that all hope is lost. i also have a friend who has an inoperable AVM but he took the risk of doing an embolization before treating it with radiation. Maybe you could ask this form of approach with your doctors and see if it’s possible. hope this helps

Thank you so much Sam.

This was an old post that I commented in, I’ve actually done radiation therapy almost 3 years ago and hopefully it made a difference. Soon time for the last MRI for the results.

I completely agree with you and luckily, I got myself up and started to live my life more than ever. I did what I’ve always wanted to, to travel and live in another country. At least, it gave me the kick in the butt to live my life as I want for a while. Now, I will see if I need another radiation therapy round or if I’m completely “healed”. Nevertheless, I feel way better :slightly_smiling_face:

Thank you for your message and I’m happy you recover as well! Bless you!