So I had my ebolization 2 weeks ago and doctors think they were able to get it all!!! I go back in August for a follow up to make sure… So I never had a bleed and have no idea what one would feel like. My doctor told me I would know for sure if something was happening! Anyways every time I feel a twinge or a pain in my head I feel sick to my stomach thinking something is happening… I can’t seem to remember what “normal” feels like!! Does this fear ever stop???
I know just how you feel because i feel the same way. I just had my angiograph done and awaiting the results. I never had a bleed or any symptoms. but since i found out about the avm it is all that is on my mind. Even if i misspell a word i wonder if it is from the avm. So let me know if or when you get the answer. I happy to read that your ebolization went well.
Being concerned is natural, but if you spend too much time worrying the avm can consume you. About a month after I was diagnosed my doctor told me I was only allowed to worry 15 minutes a day. He told me to write down my fears as they popped up then at the end of the day I had 15 minutes to confront my fears either by researching things online or just crying it out. Sounds silly but it worked for me. I got to the point where I felt like worrying was a waste of my time. Realistically you will always worry a little, but when you get to the point where you are sick and tired of being sick and tired, you’re ready to let the fear go.
Julia what great advice! I need to start doing that because worrying does consume you very easily & you can start getting obsessed with the AVM & your thoughts. Katheryn-I am glad to hear your embolization went well & wish you well!!
Julia H said:
Being concerned is natural, but if you spend too much time worrying the avm can consume you. About a month after I was diagnosed my doctor told me I was only allowed to worry 15 minutes a day. He told me to write down my fears as they popped up then at the end of the day I had 15 minutes to confront my fears either by researching things online or just crying it out. Sounds silly but it worked for me. I got to the point where I felt like worrying was a waste of my time. Realistically you will always worry a little, but when you get to the point where you are sick and tired of being sick and tired, you’re ready to let the fear go.
YAYYY Kathryn - so happy to hear the great news!!! And yes, the fear does subside with time. I spent way too many hours worrying myself to exhaustion and am starting to feel a bit more normal as each day passes. One thing that I was told was to remember that “Living is Daily” and if I spent my time worrying about what was going to happen in the future, I would lose many happy days simply living. This was easier said than done for me when I heard it but I repeat those three words everytime I find myself in that fearful place. Best of luck with your followup next month and please rememer that you are “healing” as each day passes :)))!
/Michele
I had my avm corrected 12 years ago… I had many strange sensations, pain headaches, lightening pain… you name it for about 8 months… during that time I felt vunerable that anything could happen anytime, was afraid to move to fast even… I then got back to life and all has been good since. Recently had some strange things and they are sending me for tests but hoping its nothing. I really didn’t worry at all after those 8 months… forgot all about it to a point. It truly takes time so give it what ever you need … you will know when to move on… best in your recovery…
You’ve had some great responses, so here’s my little snippet. Just as it was your choice as to how you dealt with the AVM, so let it be your choice as to when you stop worrying. I was the biggest worry wart until my lovely friends on here made themselves available to chat and meet up. The more talking and coffee mornings we had, the more I realised that i was doing okay, and that i should be more concerned about others. Worrying is just one of the things some of us are really good at. Don’t worry, be happy, always enjoy the small steps forward.
Tone
I would say you’re probably fine. I’m not an expert or anything but when my AVM ruptured, it felt at least 3 times worse than a regular headache. So I think you’ll definitely know if it happens. It’s all uncontrollable pain. As for those spasms you have, I would just be aware. That’s how most of my seizures have started. I still worry about every single thing in my life but thats just me. Try to worry less, I am. It’s gotta be unhealthy to be negative about this.
But I get those twinges in my extremities. I get headaches all the time so I wouldn’t really know about that. I still have problems and my AVM came out in March. I guess what I’m really trying to say is that yes, you’ll definitely know if you have a hemorrhage.
I have an AVM in my brain. It’s what I have, it’s not who I am. But the diagnosis also gives me allowances I would have never
taken before. If I’m tired I listen to my body and rest/sleep. Previously I would have pushed through. I find things that make me happy every day. I refused to be pressured into things that are uninteresting, unappealing or I just don’t want to do. I am beginning to put myself first. Do I worry? Yes but it doesn’t consume me. I have
learned to find humor in the situation because if I didn’t I would never leave my house. It’s my new normal.
Michelle,
It’s not like a normal headache. It’s the worst pain I’ve ever felt, including labor! You more than likely would know if it was a rupture. As for the worrying, it’s tough, I’m sure. I didn’t know I had an AVM before it bled. Try yoga or meditation. Yoga, for me, always help with stress and worry.
Michelle Pedigo said:
But I get those twinges in my extremities. I get headaches all the time so I wouldn't really know about that. I still have problems and my AVM came out in March. I guess what I'm really trying to say is that yes, you'll definitely know if you have a hemorrhage.
This is great advice and something I will pass on to my husband. Thanks for sharing!
Julia H said:
Being concerned is natural, but if you spend too much time worrying the avm can consume you. About a month after I was diagnosed my doctor told me I was only allowed to worry 15 minutes a day. He told me to write down my fears as they popped up then at the end of the day I had 15 minutes to confront my fears either by researching things online or just crying it out. Sounds silly but it worked for me. I got to the point where I felt like worrying was a waste of my time. Realistically you will always worry a little, but when you get to the point where you are sick and tired of being sick and tired, you’re ready to let the fear go.