Quantcast

AVM Survivors Network

It is what it is

Well it has now been 4 years since my AVM ruptured and in the last couple of weeks I’ve met with my Radiologist and got another CT angiogram with contrast just to see if anything’s changed in the last 2 years and then I met with my neurologist and went over the results and her synopsis was basically you’re permanently disabled and at this point it is what it is; you just have to go out there and make the best of it.
I guess you always hold out hope to get more of the old you back but at this point acceptance is the key for me and overall I have a good life so I shouldn’t complain too much, though I always have that inner pang of wanting my old self back but I have to accept that is not happening and realize life isn’t always fair…but I will keep trying for more anyway!

5 Likes

Would it be okay to wish you a happy survival anniversary?
I can empathize with having the inner pang of wanting your old self and your old life back. But I do think about maybe becoming a better version of who I was thanks to the AVM. The experiences that usually come with having an AVM (rupture) can bring compassion to the plight of others. And there is patience with ourselves and with others. We also have the chance to have a voice (or to become an advocate) to teach people to accept people as they are. Strength can come from the experience, too. The surgery is no walk in the park, but the recovery can teach a lot, and show how strong a person can be. Even though you have those moments of wanting your old self back, it does sound like you are on the right track, and strong.
Keep on moving - wishing you a great day!

3 Likes

Mike, you’ve always been a pillar of strength and a down to earth grounded voice here with us all. I’ve learned so much from you in how to have a true, accurate assessment and tackle things in a positive manner. Its unfortunate the assessment wasn’t more favourable, but with your determination and attitude anything that is possible will be! Take Care, John.

3 Likes

At the end of the day nothing got better but the best part was nothing got worse so I’ll accept that and keep moving forward

2 Likes

So crazy, in a couple weeks it will be four years since my AVM ruptured as well. I am also struggling with this new normal life and acepting that this is how I have to live now. I’m a much different person than I was. I live in constant agony with head pain, headaches, daily migraines it’s awful. I also have the stamina of an 80-year-old when I used to have all the energy in the world. Not many people understand how one day you’re living your best life and boom, life changes out of nowhere and not for the better in my case. Like the previous writer though I agree that I am now much more patient and understanding of other peoples situations. It was definitely a big eye-opener to see who were really my friends, and who fell by the wayside because they just couldn’t understand a drastic change of who I am after a stroke. This site and posts like yours definitely help to know that I am not alone in this journey that we are now forced to live, so thank you.

2 Likes

Hi Mike,
There is nothing permanent in life , neither sickness nor good health.
Keep your fighting Spirit on the top notch.
Wanted to know if you have gone through gamma knife after the AVM burst.
Regards
Eston

Mike,

am there.

Doing that.

Reinventing me.

Inertia is hard.

Hold strong.

TJ

1 Like

Eston; nope. I had a craniotomy after the rupture to stop the bleeding and relieve the pressure on my brain and then three months later I had another craniotomy to remove the AVM.

Mike, I understand how you feel, it’s 12 years for me and I still live in hope that I will get the vision I lost back. It’s hard because you can’t do the job you used to do and it’s a struggle to get the bills paid. It’s great to be able communicate here with people who have gone through the same thing. Not to be told “you should be great full your alive, it could be worse, you were given a 50/50 chance whether you would survive or not” I know it’s hard when you see your work mates getting on with their lives or your standing at a bus stop in the pouring rain and you see all these people driving along in their cars. Mike you have helped me and others to see we are not alone. I wish you the best for the future. Take care :star:

3 Likes

You’re not alone. If I let my attention dwell on the past, I see what I lost. I can fancy that I made the most of it while it lasted, but who does really? If I stay focused in the moment I can see opportunities that the old me would have have overlooked.

4 Likes

It is amazing to be on this site and see others that struggle like I do. I’ve been dealing with the same thing for a few weeks now. In November, it will be the 5-year mark since my rupture. I keep waiting for A-day to wake up and be the normal self but I know that won’t be here. I’m tired of people saying it’s lucky to be alive because it is easy for them to say. I know they usually say that becaue they dont know what else to say. They dont have the understanding AVM life so it just makes me angry. They dont know what we are going through. Now that I have gone through this I can say i don’t understand what it’s like to have cancer because we are all different people with different issues. So people on the outside of this AVM life have not faced life changing issues similar to cancer or other close to
death issues, so stop saying its good to be alive. Some days i can’t bring myself to say it is good to be alive. New life has been a real humbling experience for me. I have been able to work part-time but it’s doing stuff I never thought I’d do. I clean at the gym, clean at the church, and do jobs others dont want to do so it’s really hard for me to deal with this, especially since i have a college degree. Making minimum wage stinks. I don’t know if I have any positive answer. I just need to say that I understand. Hopefully things will change.

Living in Gods grace,
Zac

Props to you mate for keeping a positive attitude on the situation. I think everyone here has that feeling about ‘the old self’ to some degree and I hope you find comfort in that too. :slight_smile:
Peace brother

1 Like

Mike,

I take my hat off to all of you. And you, in particular, Mike give support to so many people here, it is fantastic. So don’t underestimate that part of what you do. I’m with @Roche in that, no hesitation.

Keep fighting guys because I think you’re all doing amazingly. It tough but I think you’re carrying it off.

Love,

Richard