Inoperable AVMS

I’m curious how others handle the stress of not knowing what might come next? how to plan for the future when there is this big unknown in your life?

I live alone (and in the country) much of the year, and I worry about what would happen if I have a bleed. Do I change my lifestyle? move? look for a housemate?

I know these are not terribly pressing questions for those who have had a bleed and are dealing with other issues of disability and recovery, but they keep me awake all too often.

Marcia

I don’t handle it well at all, I move in and out of denial that my AVM is there at all, I go thru bouts of shear panic, and the fear of a bleed is on my mind 24/7 then drop back in to denial and pretend it isn’t there, then repeat. I go from being totally involved in AVM and getting all the info & support I can to feeling completely totally overwhelmed. for the first few months I could not be left alone and almost lost my then boyfriend (now husband) because he couldn’t even go to the grocery store without me panicking and starting a fight with him… even now I hate being alone and constantly worry when I am alone with my 3 year old son that something happens to me and he is left there by his little self.

I am 7 years into diagnosis and most of the time I don’t feel I am any further ahead than I was the day I found out. In the movie Tuck Everlasting they father says “Do not fear death, rather the life unlived, you don’t have to live forever, you just have to live” it is a statement that gets me and is where I long to be, living my life for the moment, enjoy every gift I have been given, I am not there yet but I will be someday…

Marcia,

I find I have a lot of similarities with Lianne about how I deal (or not deal) with my ‘unknown’. I stopped being verbal about it long ago to any friends or family, I keep the internal dialog just that, internal. It has not had a good effect on my personality. I often find myself thinking things like… how can so-and-so be talking to me about… or asking me to do such-and-such when right now my pain is about a 6 or 7 out of 10 and all I can seem to think is… am I going to have a bleed?

Although I did recently try and talk to my boyfriend about it. He doesn’t know how to deal I guess. I met him in 1994 and was in pretty good health. I could hide my symptoms early on because we didn’t spend a bunch of time together. Although I hid my symptoms I told him right from the start that I had an AVM and explained it to him. I now know I was wrong in hiding my symptoms. No one likes a wet blanket and now he’s experiencing me not at my best.

For the past 6 months or so I seem to be having a very bad time neurologically and I’m not getting everything done around the house that I’d like to. He’s noticed and doesn’t understand. So I try harder, sleep less and basically run myself down trying to keep up and please him. I’ve basically come to a decision that I’m going to only do what I can and then I’m going to rest. No housework is worth a bleed, or worse, in my opinion.

Sorry for the rant, thanks for listening.

Should have read 2004. I’ll blame it on my AVM. :slight_smile:

I agree with you. I have told my husband that I would like to get a few more opinions on my “inoperable monster in my brain”. He feels it is just a big risk. However, he doesn’t live with it inside HIS head every single minute of his life. I suppose I appear normal to everyone because I am not disabled from my AVM as of today.

When I first found out about my AVM I panicked, thought I was going to die right away. I had anxiety attacks, cried daily, angry, just so many feeling’s all balled up in a one. I was told my AVM is inoperable and went all over for opinions. I was told over and over again to live my life the best way I could and move on. I have tried to just move on but it’s really ard to do that when I have a daily headache every morning of my life. Its a constent reminder that the demon is in my head. People tell me I handle all of this so well but I have know choice. My family is angry that I have this AVM because we have dealt with this our entire live’s because my mother also had an inoperable AVM which she past away from in 2004. I’m not angry or feel sorry for myself. I tell them why not me, it had to happen to someone. I truely believe that God would not have let me have this or my mother if we couldn’t handle it. We are all just passing through and our lives are not our own. I think that we all have a gift to do good in life, I could never find what my gift was until I found out about my AVM but now I realize this was my gift. As time goes by I see that I can use this as a tool for good or I can lay down and die and feel sorry for myself, I choose to be happy and not let it get to me. Don’t get me wrong, I have my bad days and some times I have my little pitty party but, I try to pick myself up and move on. God is always with me and he helps me get through those bad days that I just can’t do it on my own.

Kim,

Sorry to hear you’re having these problems. Is there a local person-to-person support group you can tap into? My sister has a severe nerve disorder (following a motorcycle accident which smashed her knee cap and tibia), so she and I can communicate, commiserate and support each other emotionally when needed – by phone as we live a thousand miles apart. But sometimes it would be nice to get a hug.

It worries me when you write you try harder, get less sleep and run yourself into the ground. Exactly the opposite of what you need!!! Find a way to set bounds – for yourself and if necessary for your boyfriend. Make rules for yourself – I won’t work past …, I won’t get less than — hours sleep, If — doesn’t get done, I won’t worry, do it, etc…

Maybe if your boyfriend does to the doctors with you one day he might better understand your limits…send him to this site to read some of the stories people tell. [This is what my sister did when we all thought she was making more of her disorder when we thought she should have recovered from her injuries.] You’ve been together along time, so hopefully he can understand what’s really going on and how he can help you stay safe and healthy (physically, emotionally).

Take care,
Marcia

Kim Palmer said:

Marcia,


I find I have a lot of similarities with Lianne about how I deal (or not deal) with my ‘unknown’. I stopped being verbal about it long ago to any friends or family, I keep the internal dialog just that, internal. It has not had a good effect on my personality. I often find myself thinking things like… how can so-and-so be talking to me about… or asking me to do such-and-such when right now my pain is about a 6 or 7 out of 10 and all I can seem to think is… am I going to have a bleed?



Although I did recently try and talk to my boyfriend about it. He doesn’t know how to deal I guess. I met him in 1994 and was in pretty good health. I could hide my symptoms early on because we didn’t spend a bunch of time together. Although I hid my symptoms I told him right from the start that I had an AVM and explained it to him. I now know I was wrong in hiding my symptoms. No one likes a wet blanket and now he’s experiencing me not at my best.



For the past 6 months or so I seem to be having a very bad time neurologically and I’m not getting everything done around the house that I’d like to. He’s noticed and doesn’t understand. So I try harder, sleep less and basically run myself down trying to keep up and please him. I’ve basically come to a decision that I’m going to only do what I can and then I’m going to rest. No housework is worth a bleed, or worse, in my opinion.



Sorry for the rant, thanks for listening.

What’s the risk of 2nd opinions? other than to your wallet.

If you’ve had the basic tests, take the results with you [get a CD copy of the scans, MRIs, etc.] and see if a different set of eyes gives you different advice.

Just be wary of the snake-oil peddlars, those who will operate w/out doing any appropriate testing. Go on line and find out who does work w/ AVMS and see them. Ask for referrals – this list is a good place to start.

Hopefully your insurance will cover 2nd and even 3rd opinions. As I wrote back in 2007/08, I was given the names of top neurosurgeons by a neurologist at Geo Washing Univ medical center, and sent them off my functional MRI. I heard back from all but one within days (the last took a week), and each had looked at them and gave me their advice (basically all agreed, to operate would be too risky). They didn’t charge, and I felt much more confident when I decided to go ahead w/ gamma knife at U Pitt.

Marcia

stacey said:

I agree with you. I have told my husband that I would like to get a few more opinions on my “inoperable monster in my brain”. He feels it is just a big risk. However, he doesn’t live with it inside HIS head every single minute of his life. I suppose I appear normal to everyone because I am not disabled from my AVM as of today.

Hi Lianne,
I wa diagnosed 12 years ago, I have been blessed with these 12 years… my daughters were only
13 and 11 then. I have watched them grow and muture into independant young women. also my best friends. My youngest gets married in two months. I could have died (I actually died 3 times and was brought back. I know it sounds silly to say but my thoughts are "I got rejected 3 times, now I’m staying…) I look at my last 12 years and my future as a bonus. I try to be the best I can.
I am lucky to be able to work part time with some lovelly ladies who know my problems, memory etc etc etc but they are lovelly an help me when I need it. BUT I have times when I can feel my AVM
pulsing in my head. I have written good bye letters to my daughters, parents and best friends, saying “Sorry, if I didn’t get to say goodby” Every day is a bonus.
I will admit that I had another small contained bleed earlier this year, since then I have noticed more
speech and memory problems.
My main concern is, every time I have a small bleed---- it kills my good functioning brain.
But never the less - we continue.
My daughters say I have 9 lives. When I was 34 I had a Melanoma cut out. 37 Cervical cancer. 41
Brain bleed and AVM discovered.
I hate that I am not the person (personality) that I used to be. I hate that I forget things… but I am still here.
I hope that you are well, take care,
Amanda J

Lianne said:

I don’t handle it well at all, I move in and out of denial that my AVM is there at all, I go thru bouts of shear panic, and the fear of a bleed is on my mind 24/7 then drop back in to denial and pretend it isn’t there, then repeat. I go from being totally involved in AVM and getting all the info & support I can to feeling completely totally overwhelmed. for the first few months I could not be left alone and almost lost my then boyfriend (now husband) because he couldn’t even go to the grocery store without me panicking and starting a fight with him… even now I hate being alone and constantly worry when I am alone with my 3 year old son that something happens to me and he is left there by his little self.

I am 7 years into diagnosis and most of the time I don’t feel I am any further ahead than I was the day I found out. In the movie Tuck Everlasting they father says “Do not fear death, rather the life unlived, you don’t have to live forever, you just have to live” it is a statement that gets me and is where I long to be, living my life for the moment, enjoy every gift I have been given, I am not there yet but I will be someday…

Dear Liane,
I know how you feel, its frightening, especially when your child is so young. I was lucky in the fact that
my children were older, for 3 months after my initial bleed, they looked after me, when they were at school it was my parents but when they came home, it was them. In a way I robbed them of a lot, they had to grow up fast… to look after me. But 12 years on … I will say now, that it didn’t hurt them. Actually, they are very caring, giving adults (Thank god). But, I can understand your worry of being alone, especially when your child is only 3. I can’t advise you anything, I can only agree with the saying you quoted … and hope and pray for you and yours
Take care
Amanda J

Amanda J said:

Hi Lianne,
I wa diagnosed 12 years ago, I have been blessed with these 12 years… my daughters were only
13 and 11 then. I have watched them grow and muture into independant young women. also my best friends. My youngest gets married in two months. I could have died (I actually died 3 times and was brought back. I know it sounds silly to say but my thoughts are "I got rejected 3 times, now I’m staying…) I look at my last 12 years and my future as a bonus. I try to be the best I can.
I am lucky to be able to work part time with some lovelly ladies who know my problems, memory etc etc etc but they are lovelly an help me when I need it. BUT I have times when I can feel my AVM
pulsing in my head. I have written good bye letters to my daughters, parents and best friends, saying “Sorry, if I didn’t get to say goodby” Every day is a bonus.
I will admit that I had another small contained bleed earlier this year, since then I have noticed more
speech and memory problems.
My main concern is, every time I have a small bleed---- it kills my good functioning brain.
But never the less - we continue.
My daughters say I have 9 lives. When I was 34 I had a Melanoma cut out. 37 Cervical cancer. 41
Brain bleed and AVM discovered.
I hate that I am not the person (personality) that I used to be. I hate that I forget things… but I am still here.
I hope that you are well, take care,
Amanda J

Lianne said:
I don’t handle it well at all, I move in and out of denial that my AVM is there at all, I go thru bouts of shear panic, and the fear of a bleed is on my mind 24/7 then drop back in to denial and pretend it isn’t there, then repeat. I go from being totally involved in AVM and getting all the info & support I can to feeling completely totally overwhelmed. for the first few months I could not be left alone and almost lost my then boyfriend (now husband) because he couldn’t even go to the grocery store without me panicking and starting a fight with him… even now I hate being alone and constantly worry when I am alone with my 3 year old son that something happens to me and he is left there by his little self.

I am 7 years into diagnosis and most of the time I don’t feel I am any further ahead than I was the day I found out. In the movie Tuck Everlasting they father says “Do not fear death, rather the life unlived, you don’t have to live forever, you just have to live” it is a statement that gets me and is where I long to be, living my life for the moment, enjoy every gift I have been given, I am not there yet but I will be someday…

Amanda,

You have my respect and admiration. I hope you continue to keep beating all the odds and enjoy your children, grandchildren and great grand-children some day.

I’m curious. What are your symptoms when you have a “slight” bleed? I know about the blinding headache of a bleed, and the slurring words and unsteady gait (which would be the case w/ any stroke), but ahave you had other symptoms?

As I wrote earlier, I live alone, and I worry both that I won’t know what might be happening to me nor how to get help. Any advice?

Marcia

Amanda,

I love what you wrote… “I got rejected 3 times, now I’m staying…)”. Awesome, just awesome! Thanks for the inspiration.

Kim

Hi Marcia, The only other symptoms I had were - I know this sounds silly but my hair actually hurt, my neck was stiff and sore and I couldn’t stand light, a bad migrain multiplied by 20. It came from no where, just struck me at work, I thought it was the beginnings of a migrain, rang my daughter to come and get me from work, by the time we got home I knew I should have gone straight to hospital. Not nice but thank goodness, a small one.
Take care
Amanda J

Marcia Frost said:

Amanda,

You have my respect and admiration. I hope you continue to keep beating all the odds and enjoy your children, grandchildren and great grand-children some day.

I’m curious. What are your symptoms when you have a “slight” bleed? I know about the blinding headache of a bleed, and the slurring words and unsteady gait (which would be the case w/ any stroke), but ahave you had other symptoms?

As I wrote earlier, I live alone, and I worry both that I won’t know what might be happening to me nor how to get help. Any advice?

Marcia

Thanks Amanda.

Marcia

Marcia,

I thank you so much for your concern. It makes me feel good knowing someone knows how it is. What I did was print out this thread and put it on him pillow. I didn’t say a word about it. The next day he apologized and said he was going to work on his attitude and was sorry for not being more understanding.

I do what I can now, and I try and go rest when the pain gets too bad but sometimes you just can’t quit what you’re doing, like dinner or when Mom needs me. She’s getting sick as we speak, which means I’ll be up and on call round the clock. She knows I’m sick, but she’s sicker and she needs help. Being an amputee makes it hard for her to do a lot of things, especially when she is sick.

I’m learning though. I was never a cook, in my past life, and now I HAVE to cook. My poor family. :slight_smile: I getting the hang of it and am learning some tricks even to help save time and energy.

The thing is… I’m scared I’m going to bleed. It’s been 9 years now since my last bleed and my pain and sound sensitivity is getting worse and doesn’t seem to want to let up. If I go down there isn’t anyone to take care of Mom and I won’t have her go to a home. That’s not how I believe.

Anyhow, another day, and another sink full of dishes done. lol

Keep your chin up and your AVM silent.
Kim

Marcia Frost said:

Kim,

Sorry to hear you’re having these problems. Is there a local person-to-person support group you can tap into? My sister has a severe nerve disorder (following a motorcycle accident which smashed her knee cap and tibia), so she and I can communicate, commiserate and support each other emotionally when needed – by phone as we live a thousand miles apart. But sometimes it would be nice to get a hug.

It worries me when you write you try harder, get less sleep and run yourself into the ground. Exactly the opposite of what you need!!! Find a way to set bounds – for yourself and if necessary for your boyfriend. Make rules for yourself – I won’t work past …, I won’t get less than — hours sleep, If — doesn’t get done, I won’t worry, do it, etc…

Maybe if your boyfriend does to the doctors with you one day he might better understand your limits…send him to this site to read some of the stories people tell. [This is what my sister did when we all thought she was making more of her disorder when we thought she should have recovered from her injuries.] You’ve been together along time, so hopefully he can understand what’s really going on and how he can help you stay safe and healthy (physically, emotionally).

Take care,
Marcia





Kim Palmer said:
Marcia,

I find I have a lot of similarities with Lianne about how I deal (or not deal) with my ‘unknown’. I stopped being verbal about it long ago to any friends or family, I keep the internal dialog just that, internal. It has not had a good effect on my personality. I often find myself thinking things like… how can so-and-so be talking to me about… or asking me to do such-and-such when right now my pain is about a 6 or 7 out of 10 and all I can seem to think is… am I going to have a bleed?

Although I did recently try and talk to my boyfriend about it. He doesn’t know how to deal I guess. I met him in 1994 and was in pretty good health. I could hide my symptoms early on because we didn’t spend a bunch of time together. Although I hid my symptoms I told him right from the start that I had an AVM and explained it to him. I now know I was wrong in hiding my symptoms. No one likes a wet blanket and now he’s experiencing me not at my best.

For the past 6 months or so I seem to be having a very bad time neurologically and I’m not getting everything done around the house that I’d like to. He’s noticed and doesn’t understand. So I try harder, sleep less and basically run myself down trying to keep up and please him. I’ve basically come to a decision that I’m going to only do what I can and then I’m going to rest. No housework is worth a bleed, or worse, in my opinion.

Sorry for the rant, thanks for listening.

Kim,

Sometimes life doesn’t treat us well, but then we’re the luck ones w/ AVMS that haven’t left us paralyzed, etc.

I have some suggestions: 1) paper plates! then there are fewer dishes to do, even if you’re helping the planet much. 2) Cook bigger meals so you can have leftovers – if not the same week, then into the freezer and for another time. It doesn’t take any longer to make a big pot of spaghetti or a large pot roast, than smaller – so fave time and mkae life easier.

Give your boyfriend a big hug from me for being more understanding.

Marcia

Marcia Frost said:

Kim,


Sorry to hear you’re having these problems. Is there a local person-to-person support group you can tap into? My sister has a severe nerve disorder (following a motorcycle accident which smashed her knee cap and tibia), so she and I can communicate, commiserate and support each other emotionally when needed – by phone as we live a thousand miles apart. But sometimes it would be nice to get a hug.



It worries me when you write you try harder, get less sleep and run yourself into the ground. Exactly the opposite of what you need!!! Find a way to set bounds – for yourself and if necessary for your boyfriend. Make rules for yourself – I won’t work past …, I won’t get less than — hours sleep, If — doesn’t get done, I won’t worry, do it, etc…



Maybe if your boyfriend does to the doctors with you one day he might better understand your limits…send him to this site to read some of the stories people tell. [This is what my sister did when we all thought she was making more of her disorder when we thought she should have recovered from her injuries.] You’ve been together along time, so hopefully he can understand what’s really going on and how he can help you stay safe and healthy (physically, emotionally).



Take care,

Marcia











Kim Palmer said:
Marcia,

I find I have a lot of similarities with Lianne about how I deal (or not deal) with my ‘unknown’. I stopped being verbal about it long ago to any friends or family, I keep the internal dialog just that, internal. It has not had a good effect on my personality. I often find myself thinking things like… how can so-and-so be talking to me about… or asking me to do such-and-such when right now my pain is about a 6 or 7 out of 10 and all I can seem to think is… am I going to have a bleed?



Although I did recently try and talk to my boyfriend about it. He doesn’t know how to deal I guess. I met him in 1994 and was in pretty good health. I could hide my symptoms early on because we didn’t spend a bunch of time together. Although I hid my symptoms I told him right from the start that I had an AVM and explained it to him. I now know I was wrong in hiding my symptoms. No one likes a wet blanket and now he’s experiencing me not at my best.



For the past 6 months or so I seem to be having a very bad time neurologically and I’m not getting everything done around the house that I’d like to. He’s noticed and doesn’t understand. So I try harder, sleep less and basically run myself down trying to keep up and please him. I’ve basically come to a decision that I’m going to only do what I can and then I’m going to rest. No housework is worth a bleed, or worse, in my opinion.



Sorry for the rant, thanks for listening.

Hi Marcia, My son had an AVM bleed in March 2008. He was treated by embolization that July. In Sept. he started having migraines, come to find out there was another AVM behind the first one. He was having migraines sometime 3 times a week. The Dr’s then put him on Propranolol and Promethazine. It helped some but not completely. The Dr’s said he wasn’t a candidate for a craniotomy so they decided to treat it with radiation. It has been a little over a yr and a half since the radiation and he has only had about 4 headaches since then. In Jan. of 2013 they will do another angiogram to see if the AVM is gone. We have been told that he still a 90% chance of having another stroke and it would probably be fatal. We both have anxiety about it. I watch his every move and he doesn’t stay the night with friends or rarely goes away from home for long periods of time. He has anxiety about going to sleep at night. He’s afraid that something will happen in his sleep and I won’t know. He is seeing a therapist and on an anti-depressant now.

It is normal to go through the 7 stages of grief when you or a loved one has been diagnosed with any type of condition. It will help your loved ones to understand a little better if they go to the Dr or therapy with you. If you can find a support group it would help too. The rehab that my son was at has a group that meets every month for brain trauma survivors. I don’t know if you are aware of it but AVMsurvivors.org also has a facebook page. I find it helpful and have chatted several times with another young lady on there. I wish you all the best of luck and if I can help in any way please feel free to contact me. It really helps to know others that know how you feel and what you are going through.

My husband has now been told there is nothing at all they can do in to dangerous place, how do you learn to live with it? truly in Gods hands ! we are really rubbish at mo scared beyond believe! xxx

Hello, Marcia
Don't feel alone. I was told that my AVM sits deep within the speech portion of my brain and if they have to go in to remove it do to a bleed that they would need to cut through areas that would leave me unable to speak, at first I said that I would be ok with that because I could learn to sign. I was told that the portion of the brain also controls the ability to tell my hands what to sign, so much for that idea. I have an appointment with a new surgen in an hour to review my latest MRI to see if things are getting worse. I have just started the process of filing for disability insurance thru a company called Allsup. I have suffered with headaches so bad for the last 15 years or so and I am learning that they may never go away unless I have the AVM removed, so it is Damned if I do and Damned if I don't. I am a 49 year old man that wakes up crying at night dealing with all of this, thanks to this site and the wonderful people that have sent thier support sense I joined last week i no longer feel so alone.
I know that it is easy for people to say hang in there, but if we all hang in together maybe we can start to sleep through the nights again.
Well off to my appointment, wish me luck.
Scott :)

Hey Marcia,

I'm actually studying OT and like you, I always wonder and fear what life may be like after a bleed. But I strongly believe, that anything sensible an individual wishes to be achieved, can be. I guess we never know the degree of impact a bleed may have on us, if and when it happens. But technology has improved so much, there is so much that is achievable with some/simple modifications around the home and apps, etc to assist individuals to be as independent/require as minimal change as possible.

If it helps, see what services may be available to assist you in the case it happens! The tasks that you view as less important could always be delegated to someone else - especially if there is government/insurance assistance to help with medical times of need.