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AVM Survivors Network

Waiting times

Hi, how are you all?
I didn´t come here for a while and opening this page even make tears come to my eyes…I know…I´m extra sensitive, because, all this COVID19 isolation reminds me of Gammaknife waiting period as well…so why am I´m finding so hard to wait these two more months? Why do I have this feeling of sadness and familiarity with all of this and I´m not stronger than everyone and minimise all of this?
PTSD sucks! Waiting sucks! Health threatening events sucks!

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Hey Rita,

Lets face it, it all sucks. None of us want to be in the situation we are in. NONE.
Nobody has the choice we wouldn’t ever choose this, but here we are and that’s not easy to accept. I think both situations do have similarities. The difference being that when it’s our own health, we are the only ones truly going through it all. But with Covid19 we are ALL going through it. The whole world’s going through it. This is a situation nobody has ever gone through before. The world has never been through a situation like this before, with the dispersion all around the world, at the speed it’s affected everybody, the global financial impact etc. This is all going to have a HUGE impact on life as we know it.

I think the reality is, try as much as we like to prevent it, we are all going to be impacted in some way by the results of this pandemic. Governments from all around the world tried to ignore it. That didn’t work out too well for them, now they’re all in a flat out panic trying to stop it, DOH, too late.

I ‘try’ (not always successfully) to look at things logically. “What can I do?” I can’t save the world. I can’t keep everybody else safe. All I can do is keep myself safe. Wash my hands. Clean surfaces and be aware of other people. If I do that and you do that and the next person does that, we’re being about as safe as we can possibly be. Now, if EVERYBODY did that, we’d all be safe. We ARE ALL in this together.
I can’t control what everybody else does (or doesn’t do) But I can control what I do. So if I’m being safe, that’s the best I can do.

I hope it helps.
Merl from the Moderator Support Team

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Hi, I wasn´t questioning the quarentine, I just wanted to know if I´m the only one that went on the traumatising waiting period of GammaKnife feeling the anxiety and memories AVM related that I was so much better already…

Hi Rita, its been a while! I think it is again the fear of the unknown. When I had gamma knife it was not knowing when it would be “better”, what side effects I may experience and if I would bleed while waiting. The whole COVID piece is again a lot of unknown, the effects it will have on our families, our communities. The self isolation or quarantine contributes to a little more time to ponder. That’s my take on it, combine the current situation and steps we are taking with the gamma knife journey I think would contribute. Although difficult to come here for you, really happy ypu stopped by! Take Care, John.

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Hi Rita:

You are so right. This sucks! I’ve had 2 gamma knife procedures and a small portion of my AVM is still in my Cerebellum. While I try to practice “prayer & patience” every day, I often wonder if my AVM will rupture again. To add this darn Corona virus crap to my menu of issues, is making me less calm and more anxious. Every time I sneeze, or cough, I ask myself “is this it”? My AVM takes up all my time and I don’t have the capacity for COVID-19 right now. Lets get through this thing together, because we are all in this together regardless what state, city, country or continent we’re on. AVM-ers, stay strong, stay safe, and keep your distance.

Sharon D…

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I think both are lonely situations. I think for me, that’s the link. I have to say I find having the radio on – one with more music and friendly chat than heavy discussion and news – helps me to feel still connected to other people.

It’s great to hear from you!

All the best,

Richard

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My 11yr journey started in Feb. Mid March we had our visit to go over options. We are now waiting until June for her first appointment for the Dr. To discuss Gamma knife mean time I’m waiting for my baby to have a bleed. So please dont feel alone. She is scared, I have told her as little about the AVM as I seen fit for her and her Dr.s agree because it’s too much for her to process. Because of the little knowledge of why a avm forms the question still spends about her twins… guess what cant have MRI and ct just because mom wants on done. I pray for everyone that needs Gods help daily, we will all get through these times. Trust in your God!

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Hey Rita,
I totally get it! I have multiple AVMs in my right arm and I’ve tried every treatment under the sun.

I’m currently hoping to try Cyber Knife. The CK doc said during my online consult than in his 8 years doing Cyber Knife, and his partner’s 20-years, they had never seen anything like what I have. However with a MR Angio, he’s willing to consider taking me on.

We just have to always keep moving forward and not look back. Keep being our best advocate, and stay positive :slight_smile:)
M

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We finally got to be seen by another Dr. This time the head of the Dept. which is taking over my daughters case. we are trying to have her Gamma Knife within the next 2 months. Eventually we will have testing done on her siblings to confirm they are in the clear. Its not common for twins to have but I am willing to scan them to see.