AVM Survivors Network

My son's story

Hi, I am the mother of a 25 yr old AVM survivor. Erik is unlike a lot of you that I have read about, because he has mulitple AVMs and cavernous angiomas, and has had a lifetime of dealing with more and more of these...he started having seizures on his 4th birthday, right at his party. He was then diagnosed with multiple AVM's. That summer, he had 2 craniotomies, and another one the next year. All told, he has had 6 of them now, with the last one being August of 2011. Each time, they take more of my son away...he loses more and more of himself. I know he is lucky to even be here, with all of the bleeds he has had, don't get me wrong! I just get so sad and angry thinking about how all of this will never end! He lives with daily seizures, has developmental delays, anger issues, and now massive weight gain after this last surgery in his medulla. Now, they think there is another bleed in his pituitary gland. At what point to you just say ENOUGH!!!? Every time we think there are no more, more crop up. How many times can you go into someone's head, before the unthinkable happens? I think this site is a great benefit for those of us going through things like this....I wish I had access to it while Erik was younger. I'm just feeling a bit sad and overwhelmed today. Thanks for reading my story. :) God bless all of you!

Again, I say God bless you kerrylks as I type this with tears in my eyes ... ENOUGH!

Thank you Susan. I am trying to get Erik on this site as well. I think it would help him to see he is not alone!

Yes, I understand your reasoning and as an AVM survivor, I found it critical to learn that I was not alone dealing with these health challenges. Good luck!

Hi kerrylks,
I empathize w/ you, your son & family.
How is he doing???
I too have multiple CMs (AKA cavernous angiomas), have had 4 surgeries & often get very FRUSTRATED.
You or your son may wish to join our CM sub-group @ http://www.avmsurvivors.org/group/cavernousmalformationsupportnetwork.
Take care & know you're not alone.

Wow....I don't know how to say this...My son has passed away today. Thank you all for your support...there must have been a reason I was Led to this site last night. Erik had a seizure last night, and I talked to him off and on for 2 hours (he lived with his Dad) and he seemed ok, so I told him to go to bed. I talked to him this morning, and he seemed fine, but with no memory of any seizure last night, or talking to me at all. It must have been shortly after I talked to his this morning, that had had another seizure and probably another bleed, and passed very quickly after that. thank you all for your kind words.

Sometimes words are not enough. Please accept my heartfelt condolences!

Kerry, I am so sorry to hear about your son's passing. I am glad you found us, as there are other parents here who have lost their children to avms and can offer you understanding and support. I wish you peace and healing.

Dear Kerry,
I am so very sorry. I pray that your son is in Heaven and feeling very happy and avm free. You have been through so much, God bless you and your family at this time. I am going to request your friendship and hope to message you soon.

My prayers are with you and your family. Cannot imagine all that you have been through. I pray that you find comfort in knowing that your son is at peace now . May God continue to give you strength.

Kerrylks, you are in my thoughts..... after reading your story yesterday, and then to hear today that your wonderful son has passed on I am feeling for you. My son also passed on at the age of 25 so I know a little of the hurt you are feeling. It sounds like Erik had so much to cope with in this life, he must be a very strong soul to be given such a burden, as you must be also. I shall ask my special angel, Michael to welcome your son. I feel blessed to have Michael looking out for me and I am sure Erik now knows all the sacrifices you made for him and the love you showered him in while he spent time on this earth with you. He will always be there for you.

Kerry, I am so very sorry for your loss. I cannot begin to imagine your pain, but it will eventually give you some comfort knowing that he is no longer suffering. {{{hugs}}}

I am so very sorry. My heartfelt condolences to you and your family.

God bless, I am so sorry. Xx

So sorry to hear this. My condolences. Have a big hug...

I have full confidence that Erik is in the best hands now and happy. I pray for you and your family to gain and maintain some peace and comfort in knowing this and to help ease your pain of missing him. Be strong.

To a mother from another, I just want to say, don’t lose hope. It is a miracle that he is here and even though we don’t understand the purpose of things, just never stop believing that a miracle can come true. My daughter is 8, was diagnosed at 2 after a massive stroke. But when people hear her story many don’t believe it. She has a huge AVM that is inoperable,from the right side of her brain that is spreading to her left. She also has a condition called angiomatosis, which makes the AVM even harder to treat. Right now it is untreatable but the good thing is that she is functional. Each time I go to the doctors my level of hope and faith shrinks. But then I think in all of the amazing miracles God has made us witness, including my daughter and somehow God gives me strength. It is not easy, especially because it’s your child and I know you know that more than me because you’ve been dealing with this for more than I have but hang in there. I will pray for you and your son. And I hope that some day you will be sharing your son’s miracle with us. Enjoy the holidays with him and take care. God bless you.

I am so sorry to hear of your son’s passing.
You are in my thoughts and prayers.
I have a 23 yr old daughter with Spinal AVM’s inside and outside her spine.
Loosing her is my worst fear. no treatments have worked.
I hope you can eventually find peace, i pray for you to find strength in this most difficult time.
sincerely Tiny

I just want to wish you and your son the best, it truly was a sad story. Let your boy know he’s not alone. I’m still dealing with the aphasia that I got due to delayed medical attention, but it pales in comparison to you and your boy.

Thanks for your story. I've been dealing with some ongoing lightheadedness lately and growing tired and frustrated and impatient with it all. I appreciate gaining a little perspective. Bless you and your family.