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AVM Survivors Network

Only you know


#1

Hello, I’m so glad I found this community. Only you know how it feels to have a loved one diagnosed with an AVM. Although our stories are as different as the AVMs we probably share the same fear and the hope in our hearts. You make me feel less alone, and that means a lot to me.
Our son (22) was diagnosed with an AVM Spetzler 4 in January 2018 after suffering from two Grand Mal seizures during his holidays. Before that we had no idea. There were no symptoms and AVM was never heard of. Because of the size (6 cm) and complexity (deep veins) and the fact that it is unerupted, the doctors decided not to treat the AVM yet. This might change in the future when a bleeding might become more probable or when our son shows other symptoms that lower his qualitiy of life. For now, he takes medication to control the seizures. Otherwise he was told to go on with his life and not to be too scared and to avoid stress. I trust our doctors. Our son will be closely checked every six months. We are in very good hands when it comes to medical support. Hospitals are great in our country (We are from Switzerland), and we are very well insured. Still, I can’t stop worrying. The feeling of having lost faith and the fear of what might happen to our son make me sick. I try not to show my fear to my son, for I don’t want to make him carry that burden too. I want him to stay positive and to maintain some of the lightheartedness that should be normal for his age. I feel so sad for him when I think of my days as a young woman, living without any sorrows.
I cry every time, when somebody asks for his age. It seems silly, I know. He is 22. Before he was diagnosed he was on the brink of becoming really independent from us. He was ready to conquer his own world. Now we all seem to be stuck, frightened and desperate.
I know, it will become easier with time. I’m working hard on thinking positive. I want to enjoy life no matter what.
I’m sure many of you have gone through similar dark thoughts. It is difficult to understand for people who don’t know what AVM means. Our son looks the same, he does the same. People around me don’t understand why I am so worried and so depressed sometimes. I feel so powerless.
What gives you power and faith?


#2

Sitta

Welcome to our community. It is a shocking thing to go through the discovery of an AVM and we, or our relatives, have all gone through that. I do think that time is a great healer and getting used to the idea, carrying on anyway, is the right thing to do.

It sounds like your son’s AVM is quite large but not complex or is complex but not so large, hence monitoring it is a good idea. However, if it does become something that should be operated on, I hope you will find friends here who have been through the same challenges and come out the other side very well.

It is absolutely normal to be shocked and scared and struggling to be positive at this time. Come in. Welcome in. Have a look round and ask whatever you like. I hope you will find more encouragement here than there is to fear.

Very best wishes

Richard


#3

Hello Richard

Thank you for your encouraging words. I’m so glad I found this network. Thank you for taking care of this website. It really helps me. There is nothing comparable in the small country where we live. I guess there are just too few people who are affected.

All the best for you too

Conny


#4

Dear Conny,

First of all welcome to our site and our wonderful community. May you find much comfort and reassurance here.

I was diagnosed at the age of 22 years old back in may 2017 and I am now 23. I had to pause my studies and move back home with my parents. I have to say the support of my parents was what got me through the darkest of days and I will be forever grateful for their unconditional love. I wasn’t always easy, but they loved me so very much and knowing that I just couldn’t give up and I knew I had to keep fighting. And now I am finally in a happy place in my life after such a long time. You may have your ups and downs but this journey does bring you so much closer even if you originally thought you were super close. The love you have for eachother through the most challenging time in your sons life will really shine through and it will mean the absolute world to him. You don’t have to be perfect, take it from me, my parents had their fair share of times when their strong masks cracked. You are only human. You might not be able to remove your sons AVM but your love and support is a bigger deal than you could ever realise. Because of my parents I have faught through this and continue to fight and I am a better version of me.

Here is my latest post, I hope it doesn’t scare you and instead shows you despite being young we can overcome alot and get out the other side. This experience also builds our charictor and makes us better people and because we are young I believe it benefits us with helpful adaptability: My left occipital embolisation story

If you like I could send you me and my mothers mobile numbers and we could call via whatsapp so its free. I am sure my mum would love to talk to a fellow mum too :slight_smile: PM me if interested but no pressure at all, always here for you on this site regardless.

Best of wishes for you and your son,

Corrine


#5

Welcome Sitta. I will tell you it is very hard when they tell you to live your life as normal as possible but don’t raise your blood pressure and it’s even harder when you have to move in with your daughter and family. Life is difficult sometimes and we have to remember to find the positives in everything.


#6

Dear Corinne
Thanky you so much for your reply. I’m getting a lot of comfort out of your words. Your story gives me reason to see things from a new perspective. I’m far away from being over the shock and from being cured from the - sometimes - overwhelming worries about my son. But I don’t feel as alone and freaked out. That’s a good thing. I can’t break down already. I will need a lot of strength for a long time.
My son’s AVM story hast just started. His diagnose is becoming more and more detailed with every visit to the specialists. I guess that’s the good news about his unerupted AVM. There is time to do some proper planning for a treatment. While my son chooses to ignore everything that is not ultimately necessary to know, I read every single line of the docuements we receive from the doctors. I want to know and to understand everything. So I’m better informed and therefore much more worried than my son. He is doing great in going on with his life like before. Maybe he is still in the state of denial, not ready to think about all possible consequences. Maybe he has actually found the best way of dealing with the situation: he leaves the worries to the doctors (and to his mom) and tackles the challenges when they hit. Maybe. The coming weeks will show how well he is adapting to the new situation. For he has no other known symptoms than the epilepsy he is able to go to work like before. He has found a temporary job and is planning on going on a holiday soon. In fall he will take up his studies. Let’s hope for the best.
Again, I’m glad I found this community. Unlike my son I’m not able to go on with my life so smoothly. Maybe I will read every single line on this website too just to feel that I’m not missing an important detail that might help my son one day.
Dear Corinne, I wish you all the best. Thanks again.


#7

Dear Kell,
Yes, thinking positive is not so easy. Sometimes I feel so stupid, because from the outside nothing has changed yet in our familiy. My son is still the same, he just has got this diagnose, that’ s all. And here I am, all negative and whining. I should be happy instead that he is doing so well.
I found this saying on a wall in a cafe when I was waiting for my son to come from the doctor’s:
In my language it said: “Die einzigen wahren Feinde der Menschen sind ihre eigenen negativen Gedanken.”
"Your only true enemies are your own negative thoughts."
I believe this is true many times.
Dear Kell, all the best for you and your familiy!


#8

Dear Conny,

I am so relieved to hear my words managed to bring you some much needed comfort. And that you are feeling less panicked now. How both you and your son have reacted to the situation are both valid and natural responses to a very difficult diagnosis. Im glad to hear your son apears to feel safe with his doctors taking care of looking into treatment and with his familys support. I am also happy to hear that your sons life is so far relatively uneffected by his AVM and he is doing his best to carry on and do all the things he enjoys. I think for me I went into information search overdrive whist staying relatively calm initially whilst my mum went into worry/panic overdrive for a long time. For the first time in my entire life, I had a problem in my life that she had no power to fix. It is so easy to say “keep positive!” and another thing to do it. Dont criticise yourself for your valid and natural feelings.

Something I forgot to mention is, and as you know my case is incredibly rare, as my health declined pretty fast with me losing many things that gave me a sense of pride and happiness and my mental health took a big hit - I started cognitive behavioural therapy to help me cope. It didnt change my situation but it did however help give me the tools to better cope with the situation I was in. It was also really comforting to talk to a professional, impartial and non-judgemental person who was neither family nor a friend and have a safe space to be completely honest about my emotions for an hour a week.

I think this could really help you too. In future if there are any changes to how your son manages emotionally or his symptoms or if he undergoes treatment, it could help your son too. Having you already having taken your sessions or already be in the process could prove to be very helpful too in future :relieved:

If you are unable to access in person CBT sessions although they are the best recommendation, I have also made a post with some free online resources recommended by my therapist: Self help online sources

Always feel welcome ofcourse to reach out and vent or share your concerns or ask for advice or experiences here. We are all here to help support you on this journey.

Lots of love and best wishes for you and your son and family,

Corrine


#9

Conny,

You’re welcome! We are an international community and we even cope with people who have little or no English and have to write in a different language. We’ll do what we can to support people.

I’m glad Corrine and you have met, though Corrine has been through a big, big deal so I was not going to introduce you in case we scare you more than comfort you! But its a good thing you’ve met. There is an interesting balance between scaring ourselves here and being encouraged, supported!

I am a natural analyst, too, so I needed to read and understand everything, too. If you are that kind of person, it is still a good thing to do, though occasionally you will scare yourself. The thing I remind myself is that life in all aspects is a dangerous occupation and I don’t worry about that all of the time, so don’t worry all the time about this.

One of the key things for me, when I calmed down a bit, was to tell the people around me what was wrong with me, tell them what a stroke is about, and to wear a medical bracelet. By that means, I reckoned I gave myself a much better chance of a good outcome if I were ever to have a bleed. It’s a very simple thing, a small step to take, to take away the worry that if I had a bleed that could be the end of it. There are plenty of people here who have had a bleed and come through, including people who’ve come through really well. A bleed doesn’t mean the end. A little help to get the right care urgently if you need it is one positive step he could take.

Thinking of you both,

Richard


#10

Connie,

If it helps, my story is here:
My Anniversary

The encouragement that Bill, Amanda, Lulu, Karen and others gave me when I first arrived, just as scared as you, I plan never to forget.

Very best wishes

Richard


#11

Richard,

Absolutely amazing read and very inspiring. I love how open and honest you are and how importantly you take it on yourself to give back :heart: you have had quite a journey yourself and although I feel sad I wasnt there through the hardest parts - I am so very grateful to have you through mine and to do my best support you in future. Though hopefully you have finished your fair share of the biggies in terms of challenges (that aren’t the fun kind).

Lots of love and keep being you, an absolute star :star: and keep me posted as usual.

And Sorry again, I will make a real effort to make that a last sloppy mistake!

Corrine