Feeling Alone in this

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28 y/o with c4/c5 cervical avm. Partially embolized and additional treatment is needed. I feel like I have no one to talk to about this. My wife’s father had a severe stroke and he is significantly worse than me so I feel bad even complaining. I require no assistance in day to day stuff anymore. I don’t want to overburden her with my weird and random symptoms and add to her already full plate dealing with him. My friends don’t fully understand because I present normally now with no severe physical symptoms anymore.

Every second of every day I am afraid that it will happen again. Every twitch every jolt of pain every single thing I feel I go into fight or flight. My avm is near the nerves that control my diaphram so another rupture could potentially stop me from breathing. I luckily was also partially and very briefly paralyzed with my only longer term deficiency is in my right hand and sometimes minor leg weakness. I feel like I am very lucky.

However, I am back to work and have panic attacks when I have a more intense symptoms. I am also scared when I am too far from my hospital/doctor. I was never this anxiety ridden. I’m loosing hair, I can’t sleep. It happened 5 months ago and every passing day my fear increases. How does anyone who feels this way deal with it? I am absolutely terrified and feel no one fully understands because I now physically don’t present as someone who went through this…

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Hi @mikefazz

I’m really sorry you’re going through all of this. I am in a similar situation and our timelines are also quite close. I had a brain AVM rupture, followed by an open craniotomy, and I am still going through the recovery process. When my AVM first ruptured, the left side of my mouth became weak. It took me months to accept what had happened and mentally prepare myself for surgery.

After surgery, I slowly regained much of my old self and thought everything would be fine from that point forward. Then I had an unexpected setback in my recovery. Since then, every new or unusual sensation in my body has brought back my worst fears and memories. Even though our AVMs are in different locations and every person’s journey is different, I can relate to the stage you are in right now.

I completely understand what you mean when you say your friends do not fully understand because you appear normal now. To the outside world, I look completely fine, but people cannot see what is happening inside. They do not see the fear, anxiety, and constant awareness of every small sensation.

When I returned to work, the first couple of months were extremely difficult. My colleagues thought I was back to normal, but inside I felt like a different person. Communication became harder, and every time a meeting reminder appeared, I could feel the anxiety building. The fear that I would not be able to perform my job the way I once did added another layer of stress.

Over time, I started accepting where I was in my recovery. I met with different doctors, found treatment that helped, and slowly began improving. I still have difficult moments, but I am doing better than I was before. What you are experiencing may also be connected to medical trauma or PTSD, although I am not a doctor. It may be worth speaking openly with a doctor or therapist about the panic attacks, lack of sleep, and constant fear.

Please do not feel guilty for struggling because someone else has it worse. What happened to you was serious, and your fear is real. You are not complaining, and you are not alone. I am going through a similar phase myself, and I am glad you shared what you are feeling here.

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I really appreciate the kind words. It’s great to hear from and connect with people who are in a similar boat. Praying you continue to recover and feel well.

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Hello! I understand how difficult things are for you right now. I often feel lonely too, because people who haven’t been through this can find it hard to truly understand. And sometimes you don’t want to burden others with your anxiety, especially your loved ones. So you end up alone with your fears, sometimes terrifying thoughts, and worries about the future.

The most important thing I’ve learned is not to suppress those emotions and thoughts. It’s important to let yourself process them through creativity or whatever helps clear your mind-whether that’s watching movies, listening to music, or something else. For me, dancing and freewriting made a real difference.

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One more thing I want to say is: don’t rush yourself. I know how badly you want to get back to your old life, but the truth is, that’s not really possible. Instead, you have to build a new life, taking into account the amount of energy and resources you have. Recovery takes a long time, and it requires an incredible amount of strength. Most of that work is invisible to others, but inside, huge changes are happening.

At first, I thought my life had come to a standstill. I went back to work quite quickly, but it still took me three years to recover mentally. Even now, I can’t honestly say that I’m completely and permanently healed.

Recovery comes in waves. There are calm periods, but there are also times that feel like a tsunami. That’s normal. With time, you learn how to live with it.

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@mikefazz

I just want to encourage you that there are no scales, no graduations in having an AVM or having a stroke: you don’t need to feel “lesser” in any way. It makes perfect sense that you don’t want to overburden your wife with how you’re doing. I think there are a couple of things we might say to you about that

  1. Talk to us. That’s what we’re here for. We get it and actually, we’ve all wanted to spare our family some of the difficulty.
  2. I do think you need to talk to your wife from time to time about how you’re doing: it may well be obvious to her as well. I think it is much better to make sure you communicate, though you don’t need to lean on her emotionally every day. It’s a good thing to balance it a bit.

I do think the concerns you’re going through are normal considering what you’ve gone through. I think there can be an element of PTSD (i.e. post-traumatic stress) about a bleed or an operation and the hypervigilance that we can get into. I found myself listening to all of the odd noises, slight dizzinesses etc that I had post op and I have to say that I think being so hypervigilant slowed down my recovery and my resumption of normal life.

So, if you can, throw off any hypervigilance. Look forwards, not back. If you need a bit of help with letting go of those things, I think it’s pretty normal, perfectly understandable to need a bit of help, and you may need to talk to your primary about it, about whether there is an element of PTSD there and what might you do to get past that obstacle.

You’re not alone. Indeed, it’s great that you & Wayne immediately have each other.

You’ll get there. Always feel you can talk to others about how you are.

Very best wishes,

Richard

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