My AVM is coming back after years. I’m having a really hard time with it. I’ve had so many surgeries. I don’t want to have another one. It’s going to be at least a month before I can get back to the AVM specialist. I don’t know what to do. I feel like people don’t understand. You just always have this sense of something looming over you. You never know when you’re going to have another bleed, you never know when you’re going to end up back in the hospital, and you never know when it’s going to stop. I’m just so tired of it all.
I am so sorry about what you are having to go through Bunny - it is really rough. I know it doesn’t help much in the grand scheme of things - but I am wishing you the best possible outcome when you see them, and keeping fingers crossed that it can be sorted quickly for you! know you have always got people routing for you here!
Bunny, I am so deeply sorry to hear this. When I read your post my heart sank. I absolutely hate this for you. I can’t even begin to imagine what you are feeling right now and I know that only you can ever really know since you alone are the one having to experience and endure this horrible situation. If you need to talk I will always be here, along with the rest of our friends in this wonderful support group. I wish you so much luck and I hope that you can find the strength to carry you through these difficult times.
Hello. I have a pelvic avm been symptomatic for 12 years now. I’ve had a lot of bad symptoms and most doctors don’t even know what it is. So if they can’t figure it out, there must be nothing wrong. I’m on my 7 specialist and want to go another surgery. I had 2 ten years ago but it came back and twice the size. My symptoms are getting worse but a surgery could make it even worse. I’m losing feeling in my leaf’s and have horrible abdominal pain when I eat or do anything strenuous. I know how you feel and never listen to doctors say it’s no bid deal. Everyone is different and hope you can find help n relief.
It is very rare to have this and not a lot can be done. Embolizations seem to be the main answer.
All the best
So sorry to hear this Bunny. AVMs are so mentally exhausting to live with. I can’t imagine how you must be feeling at the idea of being sucked back in, after being free of it for so long. You’ve come through once already, you can do it again. I hope you find the strength you need, in the meantime come to us to vent, lament or ask for advice. We understand and we’re here for you x
Yes, it is so frustrating.
How do people manage having a professional life or a home life? Do you just always worried that you’re going to have another AVM rupture or bleed?
I just don’t know how to plan for the future. I caught myself thinking that I need to organize the closets and throw a bunch of junk away just in case I don’t make it one day. I didn’t want my husband to have to deal with that. I just keep telling myself that it will be fine.
Most of the time it is just mildly to moderately uncomfortable. I have these episodes of really intense pain. The pain that I’m experiencing tends to come in waves. I can feel it coming on, then it gets super painful, then it starts to die down. Sometimes it just lasts a few hours, sometimes it lasts most of the day. I never know when it’s going to happen. It seems to be triggered more by stress and high blood pressure. Does anyone else have this too?
Yes, I think the worst part is that most of the doctors don’t know what they’re doing. I spoke to a doctor in the ER, and he said that he had only seen two AVMs in his entire career. Both of the ones that he had seen were cerebral and stable at the time. He had never even heard of an AVM being outside of the brain and spinal cord. Most of the time my doctors are just dismissive saying that it can’t possibly be an AVM. I’m going back to the AVM specialist that I saw in 2007 and 2009. I’m hoping that he will figure out what is going on. He really helped me with my uterine AVM and my leg AVM. I’m hoping he can help me with this too. Hang in there! I know this is tough. I’m sorry that you’re going through this too.
I’m sorry to hear that you’re going through a difficult time right now & hope it gets better real soon… as AVM survivors I believe we all feel this way at some point as it does take it’s toll on us mentally… the only advice I can give is to stay strong & keep pushing!
If it gets really tough then maybe you should try to talk to someone to get some help & guidance… God bless!
Hi! I hope you find the strength to continue. The pain you’re experiencing sounds similar to mine. I always say I am lucky because it is not continuous and comes in waves but it is exhausting. Find the triggers: mine is my period but also exhaustion, compression and doing too much (that includes walking). I really had to restrict how much I physically do. To the point that, to keep my job, my husband had to step up and handle everything else at home : from washing up to house cleaning and cooking. I still do the laundry but I need help lifting washing in and out of the washing machine/ dryer (no bending/ no carrying or very limited). Point is : listen to your body and don’t think you’re being lazy. Do all that and wait for the embolisation. I have just had my first one after 3 years of waiting and I’ve got some energy back. Some new pains too but I can walk (my legs were starting to go under me), I can eat normal amount of food without vomiting and I am not totally exhausted. Not doing anything is not an option as it only gets worse with time. I hadn’t even realised how wiped out I was and how restricted my life had become. So look after yourself and fight to get some life back. Sending you strength and love x
Being in the right place helps, Barrow did mine and everyone at other facilities including my PCP just ask me dumb questions - I don’t know if I can take any more “how are you still alive”
Not sure who’s done your treatments & what not, but “try” to put yourself in the best hands possible. Def sounds like you’ve already a “few” procedures.
Sorry to hear lady
It’s very tough to deal with - my PCP looks at me like I’m some walking miracle < and, this a full on reputable MD
Hi BunnyF. Sorry to hear about your intense pain. I’m all for throwing away junk. There’s no downside and you can always accumulate more in the future. I know there’s a metaphor in here somewhere…
Ahhh! Finally I found it. While your career/professional life is certainly not junk, it will almost certainly be there in the future (or one that’s similar.) Best wishes, Greg
Barrow is the best! Thank God it exists. Wish more people could get there for their AVMs.
And to be located just 20 minutes from it with this condition - what are the odds of that
Hi Bunny, I was thinking about you so I thought I’d say “hi”. I hope you are in a better place than you were in November. Don’t forget that you’re a fighter and you have “true grit.” (More than Steve McQueen.) I’m pulling for you. Greg