Five months ago I didnt even know anythingabout avm. Guce months ago I had a bleed and an emergency crainotomy. My mother did some reseach about avm and learned that its possible to have a small bleed which usually goes unrecognized- in september 2013 I passed out and latet had stomach problems and didnt even think it had anything to do with what Im fealn now. This has veen bugging me, i cozld gave known this was going to happen i vaozld have suspected! Then again, there is nothing really I can change now…
I feel so anxious, why me? When does it end? (I am being very honest)
Dapotsil, This the place to be honest about how you feel after having a brain bleed due to an AVM. You are at the very beginning of your recovery, Dapotsil. Please know we've all been there and are here to support you. Stay Strong & Positive!
Hi Dapotsil, I have a similar story really. I was hospitalised with stomach pains and had all sorts of tests done even an endoscopy (camera down my throat) but all the test came back clear and I was told could be acid issue. Then a few months later I had a major bleed with a large clot and an emergency Craniotomy also (Dec 31st 2013). I also had no idea what an AVM was and it wasn't till I was discharged from the hospital with an active AVM I did research and found out how serious things were. :( . I then went into hospital on July and had my AVM removed 7th July via another Craniotomy so 2 in seven months :( , There were complications during the surgery and this meant that instead of it lasting 3 to 4 hours the surgery took 10 hours. But I have recovered with no permanent issues except headaches which are a result of the initial bleed I had not the surgeries. I think the point I'm trying to make is that the surgeons that take care of AVM's are the best surgeons in the world and even though its a serious situation to be in there are loads of us out here that have been through it also and came through it perfectly fine :) , I'm back at work full time again and am living a perfectly normal life :) , stay positive and strong the biggest battle you will have is with yourself and remember to get plenty of rest/sleep as I found that was the key for me to have a great recovery. Take care and do let us know how things go with your recovery :) . wishing you all the best.
Everything is clearer with hindsight, Dapotsil. Many members here, including me, feel like they would have or should have done things differently if they had had more information about avms early on. It is better to look forward than backward. The good news is you are here, you are well enough to write to us, and you have a future to look forward to. Taking care of yourself and figuring out how to maximize your enjoyment of that future is the best place for your efforts.
A counselor may be able to help you sort through the why me and when does it end questions. Members often have anxiety and some post-traumatic stress from the very frightening experience of having a rupture. It takes time to get over a life-changing experience like yours. Posting here helps, too, and feel free to keep posting. Those who blog here regularly can look back on their blogs later and see how far they have come. Be kind to yourself, and give yourself time to adjust to what has happened. We are here for you.
I agree with dancermom's wise words Dapotsil. We have all been drawn to this site because of a common problem, an AVM, but it is clear that people have had widely varying experiences and outcomes. Don't be anxious, that won't help. Just accept that it has happened and make the most of things. We all say "why me?" but on this site we are not alone. And as time passes we are able to concentrate more on enjoying life and less on our problems.
Please be honest with us -- always. And we will try to give you honest answers in return. But as dancermom says, if that is not enough, don't be afraid to seek counselling about your issues. That is a sign of good sense, not of weakness.
We wish you all the best my friend.
Geoff.
Dear Dapotsil,
Thanks for sharing with the group!
Your feelings are completely understandable -- and justified.
One book that helped me is "When Bad Things Happen to Good People", by Harold S. Kushner. It is natural to taunt ourselves with such unanswerable questions as "why me?" But Kushner invites us to try to focus upon a different question instead: Now that this has happened, what am I going to do about it?
I'll be honest with you, too, and admit that even though I succeeded in making the transition that Kushner suggests, there nevertheless has remained an indignant feeling that I didn't deserve this. It's tough to have to accept that I am powerless to "call all the shots" in what happens to me and what doesn't happen to me! I do my best to be gentle with myself, however, because I'm merely human. You are too. But midst the sorrow, THIS I know to be true: being human is beautiful and magnificent.
I'm wishing you all the best!
Peter
You are smart to ask yourself questions - keep doing that. my neurosurgeon, Dr. Limbrick sees that it helps me fit all of my life together, as one life, instead of before and after. I hadn’t ever heard of an AVM or bleed or craniotomy or aphasia or craniectomy or, my favorite, Bone Flap (which my mom wanted to name our new dog). My vocabulary has grown so much. I also didn’t really get true friendship, family reliability and how ‘valuing diversity’ really looked. Now, I know those things. What if my mom could have looked into my baby pictures and seen my AVM when I was little… What if my AVM had ruptured 3 months earlier when my mom and I were camping in (way off the beaten track) Albania after my moms cancer diagnosis - far away from any hospital or English speakers. I sometimes focus on why concrete and asphalt are next to each other on interstates- it grabs my attention visually. I have to decide to distract myself from focusing on that -cuz why do it for too long? I guess I’m saying I get your wish to go back so you might be some place different and hyper-focus/distractions, and your worry about what will it be like from now on. I don’t know, but I never really did -I only thought I knew. I am a rock climber. But, now I know what being strong really feels like. Be around people who believe in you and your recovery - that’s what helps me. Keep going!
Hello Dapotsil, I hope this finds you having a great day. No you may not be outside running around or at an old boring 9-5 job ( wish I could) but you will find that opening your eyes, IS a great day. You might not feel good, and it may not be the best of days but it is a great day. It beats the alternative. Now there may be days that you might not think so, but you will just have to trust me on this one, but it does. Like you and many, many others on here, I had not a clue of what an AVM was or what it looked like or where it come from, but I have a great primary care doctor who is also my wife’s boss who explained it all in great detail.
I don’t remember any of it, can’t remember much of anything that happened from the onset of the rupture of the AVM on December 14th, 2004 up until a few days ago. I can remember a few things because I go to bed at night thinking of them so I guess they are hard wired into my brain. The first thing I can remember is my brother asking my doc. Where do we go from here? He said I’m not sure, we’ve never had anybody get past this point before, so everything from here on is new to you, me, him, that was me he was referring to, and a few others. We live in a small town with a small hospital and they knew that they couldn’t do anything for me so they called the nearest “big” hospital, but they wouldn’t take me because they were afraid I would die in transport or in their hospital. So they called Duke Medical out of Durhamn , NC, 2 hours away, they said we have the best neurosurgeon in the world, we’ll come pick him up. Before this, my doc asked my wife if she had contacted my family, she said no, he said “you should”’ then grabbed her and hugged her and they both started crying. That reminds me, I need to talk to him about hugging my wife like that…nah, I have nothing to worry about, even though he is a very good looking young doctor and every woman in town can’t understand how she can work for him and get any work done. They say they would just sit and stare at him all day, she says, I’ve got too much work to do and I have a better looking man at home.
Any ways get to Duke they do MRIs and run all the test and find out that it is located in a spot where they can’t operate on it. They give me 3 options. 1: sit around and see what happens. Umm, No. B: embolization, where they glue it up going through a vein in your crotch area and if they make a teeny, tiny minuscule mistake in any direction I could be paralyzed for the rest of my life. Uh hu. 3: Radio static therapy where they screw a brace to my head then screw the brace to the table, then shoot a powerful Ray of radiation at the AVM to kill, shrink, and dissipate the AVM usually within 6 months to a year. Now we’re talking. Let’s get to it. They do that and set me up for a checkup date in a year. During this time I get a shunt put in by Dr.genius but still keep getting these pretty bad headaches. I go back a year later and a new Doctor comes in and says great news, it hasn’t gotten any bigger…"but it hasn’t gotten any smaller yet either. That’s ok, sometimes it takes 2 or maybe 3 years to fully work. I tell him about the head aches and he says that I would have to go to the er about that.
Here I am, in the neurological part of the hospital, neurosurgeons all over the place and I have to go to the er. He said don’t worry, I’ll call them and tell them your on the way down, you’ll be in and out in no time. 8 yes EIGHT hours later they finally call me back to see a resident. I tell him what is going on, he checks me out and says I think it might be the shunt, let me call Dr. Genius. The doc said its not the shunt, give him some Tylenol and send him home. When the resident walks in one of my headaches kicks in. I grab his arm, not on purpose and the bed rail. When it subsides the bed rail is bent and the poor lad says I think you broke my arm. I apologize but say this is the headache I am trying to explain. He immediately goes and calls the best neurosurgeon in the world back and explains what happened and he said "if his shunt was malfunctioning, he would be having the worst headache in his life, give him some Tylenol and send him HOME!!! I tell the resident I know it’s not his fault, but I deny the Tylenol because I know how much they are going to charge me for 1 and it would be enough to almost buy the bottle I have in the car. Dr. Personality no longer works there, heard he moved out west somewhere.
Any way after months of trying to find another neurosurgeon to look at my shunt and my personal doctor calling in a favor, finally got a new one and went in did the shunt mri, he asked if I had plans? I said no he said you do now, head over to the hospital. Showed me the scans, shunt was nowhere where it should have been. After he got it fixed and a couple of revisions, bad valve twice it has worked,knock on wood for about 8 years.
The why me part? Why not? I figure, if it wasn’t me, it might have been one of my kids, or my wife, and I could never want this for anybody, not even my greatest enemy,which I don’t have any. Life is too short to sweat the small stuff, and to me now-a-days, it’s all small stuff. Look, I am taking up too much space on here, but if you want to get together and chat on FB or even on the phone, let me know. I went through a lot of stuff and still going through a lot of stuff, so we may as well go through it together. Let me know. If you look me up on FB it is Todd Johnson with an older man as my profile picture. That is my Great Uncle Lester. He passed some time back so I’m paying homage, he was a GREAT Great Uncle. Gotta bounce!
I had been a cardiac surgical ICU nurse for five years and had never heard of them. My lingering deficit is my memory so I am currently unable to work. I am hopeful to be able to work again some day in some capacity. I can tell you I definitely went through depressive episodes following my stroke and surgeries. It is normal and is a coping mechanism. However, it is not productive and if you wish to progress with life, you can't keep moping. There's no easy way to get over this and the support of family and friends is very important in the healing process.
It is always a shock when you are first diagnosed with an AVM. I was diagnosed 14 years ago now and some days I still can't believe I have such a rare disease. We are all fortunate to have an online survivor website so we don't feel so isolated and alone on our journeys. I'm glad you found this site. This is the place to lay our true feelings out in a safe community of fellow survivors.
that is so interesting. I came to this site to find out about my son's condition which ended up to be a develpmental venus anomaly, not avm, that ruptured. it all started with a severe stomach pain also, he was 17 at the time, and i thought he had apendicitis or something, asked thr nurse on the phone, recomended to wait a couple of hours,and go to er if it wasnt getting better. He went to sleep, amd then the big seizure and lost of consiouness, we found out later he had an hemorrage.
i still wander what the stomach pain has to do with the clot? Doctors dont have an explanation since they say it is not the way blood gets in and out to the brain..., maybe the clot was in the stomach and traveled? Doc says it is not possible. he is doing fine and in college now, but i m always scared. There so many bad things that could happen, but then again,many bad things could happen to anyone.I guess the important part is to be positive and to take the challenges that we have day by day, being grateful for what we have and surender to what life gives as challenge.
I feel the same way. I have had symptoms of one from as far back as as I can remember. If only I hadn't put them off as something else. This THING would most likely be gone now.
Hi Dapotsil - Thank you for sharing the research information.
Like you, I didn’t know a single thing about AVM when I had my bleed, and I required emergency brain surgery.
I had some issues (was in a coma, etc.), and when I was able, I was very eager to know what had happened…I was unconscious by the time I arrived at emergency.
I found this site by sheer accident way back when (end of 2008), and I’m very glad that I did and that you found it, too.
I didn’t know one thing about AVM and actually Googled it to find out more for my own knowledge and for others. I’m thankful that this site came up.
Everyone’s different regarding recovery, but it will get better.