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AVM Survivors Network

Scared, lonely and cunfused =(

Greetings all,

I've been on this journey for several months now, and it seems like it isn't going to end anytime soon (at least not end well).

I have 7+ PAVMs - this was my introduction to the world of AVMs, and, to be honest, was a very gentle introduction compared to many of your stories, Like most of you, I have dealt with ill-informed doctors, unsympathetic employers, and confused family members. My plan was to have these embolized this week; however, I have had to postpone due to other complications.

I have 1 CAVM - After discovering the AVMs, I was encouraged to have an MRI to check for other problems - dynamic MRI scheduled directly after the first one . . .. now I have to decide how to deal with this. I know I'm not being logical now, but I am tempted to just leave it alone.

Pulmonary hypertension - the HHT specialist I have been working with ordered an bubble echo before I flew out for my embolization . . . guess what . . .I have pulmonary hypertension. Doesn't sound all that bad, but from what I've read, it's not good.

Three times I've been called a liar by friends because "your story keeps getting worse and worse" . . . . "you keep changing your story" . . . and to be honest, I "feel" okay, and you wouldn't know I have any problems by looking at me. My employer keeps pressing me for detailed records from my appointments . . . I don't really mind, but it's as if they don't believe me either.

I just feel so alone (except for you guys) and I can't really see any constructive steps to take. It is getting a little harder to go into work each day, and I am quickly loosing the few friends that I do have.

Any ideas from those who have gone through this stuff already?

Thank you SO much for your kindness!

Hi Joshua,

Sorry it’s been so rough with friends and family and work. My husband was able to say “brain surgery,” which gave people some idea of how serious his AVM was, but even then, he was expected to come back to work within a few weeks and work a LOT of overtime. Some people just don’t get it unless it’s happened to them, and others don’t want to face any kind of illness or disorder in any way.

Have you described for your friends and employer a few simple worst-case scenarios? It might help them realize the extent of the problem and not get stuck on the details. Some people are convinced by statistics, or a medical pamphlet or printout from a hospital website, or making a comparison to some other disease that’s better-known but has similar risks.

Good luck!
JH

Hi Joshua, my husband was diagnosed on July 22nd has had 2 embos and the 3rd one will be on the 30th of this month, then they will (hopefully) do the crani. I totally understand the whole wow you look great. Its not like he has a cast or anything you can “see” but as he puts it “I’m broke” I have notice a few little things that have changed and of course the working 1/2 days and being exhausted. His employer is great! But friends…just like anything have kind of forgotten, so thank goodness we have eachother. I am sorry you are having a hard time all the way around. Be strong and be kind to yourself. You will find so much positive energy on this site and just know that you are not alone!

Hey I know how ya feeling. I’m 16 and I’ve been trying to get through my situation for a while. I’m actually seeing my surgeon tomorrow because of more pains emrerging after treatment. I also believe that having an AVM leads to serve depression. The way I cope with this problem socializing as much as I can which puts your mind of things.

Thank you guys for your kind words . . . I think I just had a bad day yesterday, and needed to vent. I hope all is well with all of you!

That’s one of the reasons I love this site and the people so much…when we need to vent someone is always there to help. I’m sorry you’re dealing with all of this. I “get it” too. I’m exhausted pretty much all the time and no one, not even my husband, understands why. When I tried to go back to work everyone was very nice but didn’t understand why I wasn’t as efficient as I was before my 4 BRAIN SURGERIES (yea, hello?!) and why I was unable to work a full day. Then when I discovered that I could not work, my friends were completely aghast! I look so good and sound normal, why can’t I work? Anyhow, vent away Joshua! We are all here for you for both the good and the bad days! Hang in there!

I know how you feel… We look fine but just b/c we look healthy doesn’t mean we are! At any moment something can happen to all of us who still have our avm’s. Its hard not to get depressed and mad at people (even the ones you love) b/c they don’t understand. That is why we have this amazing site! I still deal with people not getting that i’m fine and 10 mins later I have a major headache. It sucks and I find out new info every time I go to the Doctor. Its been 3 1/2 yrs now and still I learn new things :frowning: Best of luck to you and I will listen to any venting you want to do! Stay positive and try to get your family members to join this support group then maybe they will understand better :slight_smile:
~Andrea~

Hey Joshua. I know you said below that it was prob just a bad day, but being able to share those emotions with all of us is exactly why we are all here! We all have pity pit days (I’ve had quite a few lately myself) and really the comfort, encouragement, and understanding we all get from each other…best medicine ever!!! I hope you are doing ok. And I know its harder for all of you with the “hidden” lesions. I guess I’m lucky that people can’t really question me since it is so visible. Just know that tons of people won’t understand, but we WILL! We know you are trying to get better, to be your own best advocate, and that it just gets old. So when you are feeling down, don’t hesitate to lean on all of us. We love every member of this AVM family and want to be here to help you through the rough times!
Smile & have a treat! It does help a lot! xoxo

My own sisters were very hard with me when I had my AVM, also not understanding and tired of my stories and my pain.
Keep focusing on yourself and stay positive at all times. You will get thru with it. And your are not alone, I know exactly how you feel but don’t expect your friends and family to get it. It is a time when we need comfort, understanding and love, however we don’t always get it.
Keep telling people how you feel on a day by day basis. Stick to the facts.
Know that we will be thinking of you.

My most successful technique will probably not be liked by this group, but it says something about the people that I work with. I’ve had best success by letting them forget that it ever happened. They prefer to live their lives without spending much time thinking about others. Remember that old rule; 95% of the time people do what they do for themselves and the other 5% of the time, they just do things.

So, I don’t tell them how about memory problems or difficulty keeping my mind on one thing at a time. When they criticize me for being disorganized, I let them call me lazy. I silently work on various methods to improve, but don’t advertise or ask for help. This may not be the right way, but it works a lot better than asking them to understand.

Unfortunately, I think your problem is a lot different. You are going to need a lot of time to get various operations to have these things fixed. Concentrate on telling them only what they absolutely need to hear, such as “I’ll be gone for 5 weeks for some surgery.” and then go on to talking baseball or whatever.

Try not to focus always on your problem. Talk with them on their subjects.

This may not be the correct way, but it works better than me expecting work and friends to want to know all the details of my AVM.

joshua,
i know how u feel, my AVM is in my leg but still people dont belive the pain and problems i get. my husband and kids do but my employers are not so considerate, i work for the police force in the uk as i was told the best thing to do is keep my leg mobile or end up in a wheelchair. when i did so i lost benifits ect as they cant understand, they say i cant be in pain, my leg cant give way la la la, i now want my leg amputated its so bad. keep your chin up mate. the AVM group is so helpfull.

Joshua: It brought my heart to read your post as I can so relate… My advice I tried to turn this negative of having an avm into a positive and althought I am still working on it it is difficult. Friends…well they are supposed to be with you through the challanges in life so maybe let them go… You know in your heart your feelings and all s hould understand…I still don’t have family members talk to me about my avm… its their issues not mine. I recently had my last embolization which I believe got rid of my avm but I will see for sure in six months…my neuro reminded me it can leak again… anyone I have a post on here somewhere (so not into computers lol) the ten things I learned. I hope you fid it and read it and if not I can copy and paste it to you Again, I wish I can make this all go away for you and others here…I DO know how you feel unforunately people don’t get it. I have been excluded from things, etc. and he hurt is gut wrteching at times. You just focus on getting well, coming here for friendship, love and support and always rember God is good. Take my my friend, Mare

Hey,
My name is Chris and I’m currently going through a similar situation. I’m very sorry to hear about your situation 16 but I was wondering how long ha

tania goddard said:

joshua, i know how u feel, my AVM is in my leg but still people dont belive the pain and problems i get. my husband and kids do but my employers are not so considerate, i work for the police force in the uk as i was told the best thing to do is keep my leg mobile or end up in a wheelchair. when i did so i lost benifits ect as they cant understand, they say i cant be in pain, my leg cant give way la la la, i now want my leg amputated its so bad. keep your chin up mate. the AVM group is so helpfull.

You’re right no one understands what we go through but us. That’s why it’s such a good site. But I came so close to death a few months ago, that I appreciate life so much more. I try to remember the preciousness of life every single day and find ways to make a mondane day be better by taking a walk, going to a park, or just enjoying the fact that I’m alive. At least you can work, even though it’s difficult. I made almost $100,000 last year, and this year I can’t drive or work, so I’m making nothing. My hospital bills are over $300,000 (no coverage) so I’m going through bankruptcy. But that’s fine - I’m alive. As I said, remembering that each day is precious makes everything better. Forget the people that don’t understand. They’re nieve. Just appreciate every day you are given.

Josh,

My heart goes out to you right now. I totally understand how you feel. I went through the same things when I was first diagnosed. My then-husband decided that it was too much to handle because my symptoms were not visible to him. My pain wasn’t like a cut or an open wound and I was called a liar and continually put down… this was after I was diagnosed and my doctors had told us how serious it is. Needless to say… he’s no longer my husband :). I’ve chosen to surround myself with a few people who care about me and take me seriously rather than a bunch who think I’m faking.

So first and foremost I can offer you the knowledge that you’re not alone. Remember you right now and that’s not a selfish thing to do. Hold yourself to your standards and yours alone because I guarantee you others may have read the symptoms but they kind of don’t understand until they’ve completely felt what we are going through (I’d never wish these AVM’s on anyone).

About the work situation… has your doctor considered the posibility of disability for you especially with your condition? Maybe that would be an option for you. I hope this helps and you’re in my prayers. Take care.

Jessica

Hi Josh, I am sorry to hear your sadness and I would love to give you a well deserved hug. My son is 10 1/2 and has a residual AVM after major surgery 2 1/2 yrs ago and I don’t know how i am going to tell him he will need to have this taken care of again. I look at him and he seems so healthy, it is a very scary feeling. He also has no symptons. We have had a hard time maneuvering around the health care system and I am a nurse. So for those not in the medical field it must be so difficult. My son’s neurosurgeon is chief of neurosurgery at Chidrens Hospital of Phila. a top hospital in our country he sent us to Jefferson in Phila. said the AVM was to small for him to operate on but something needs to be done. We went to Jefferson with our CD’s (angio, and Mri) and they couldn’t open them the next day the neurosurgeon called and said he thinks he can operate, we are meeting with him tomorrow, but Jefferson is not a pediatric hospital so we made another appointment with a neuro surgeon in NYC Methodist Weill Corneill. My main point is you need to continue to focus and find the best Doctor in the country asl long as your insurance covers it, and you know that you are doing what is best for yourself. Jobs don’t care about us, there is so much that can be done and you just need to get to the best Doctor who deals with PAVM’s if you need some help I will do research for you. Know that others are thinking of you and you are not alone. It is a very strange feeling to have something so serious in your body and look and feel so normal I look at my son and wish it could be me not him I know life is so unfair but be strong and continue to get help and treat the problem. I had a chance to take a job position change and I told them no cuz of what is going on with my son, but I also felt a very weird feeling about using my son as an excuse yet it is the truth but our minds play head games when we are dealing with difficult situations. Take care of yourself and keep strong.
Diane

Will pray for you. My wife gets severe depression from all that she goes through with her AVM. I think the depression rubs off as well to husbands. It’s all really scary stuff, and no one has ever heard of it until it happens to you, or someone you know.

Hey everyone . . .

I wanted to stop in and give you all an update :wink:

This week I had 13 coil embolizations . . . . now, everything is taken care of except the CAVM.

For the most part everything went smoothly. The only problem was with “referred pain” - some of the worst pain in my life.

Thanks again for all your love and support!

Hi Josh,

Just wanted to wish you well & I totally understand that you were having one of those bad days. I still get them, and as Trish said, this is what this site is for as people 'get it.'
Hang on to your friends as they are important. All the people you know, including the bloke in the corner shop or the gal who serves you your coffee/beer whatever can offer you something different and you can do the same in return. We all have something to give.

best wishes
flower

Ugh! Really that is just making every thing so much worse. I am sorry this type of thing happened to you. It shouldn’t and should never happen to anyone. The only thing your employer needs is a note from your doctor saying you needed this time off for this reason or you have restrictions for that reason. They should never ask or be shown your medical records. It is personal information. It sounds illegal to me for them to request detailed records. Hope things get better both physically and emotionally.