20 year old son with grade 4 AVM, CyberKnife at Stanford in January

Saying hello and thanks for this supportive/informative network. On his 20th birthday (Dec. 2017), my son had a brain bleed/hemorrhagic stroke while at college - first thought to be Meningitis and then the CT scan showed the bleed. He was transported to Stanford (Dr. Steinberg is his neurosurgeon). Fortunately, he suffered no loss of faculties and the angiogram showed no aneurysm. Recovery took several months. It is a grade 4 located directly in the center of his brain, at this point operation/coils, etc are not an option. He had CyberKnife radiation in early January - 3 sessions - with Dr. Chang and Dr. Hancock. And now we wait and wait and wait. His first MRI since the CyberKnife is in July and as you all know, we don’t expect any changes that soon. He took the last quarter off from school and has started again with one class to see how things go. In his young life so far, he’s battled mild cerebral palsy and OCD. All things to do with the brain. Up until this stroke, we had no idea about AVMs or that he had one. My husband and other son have also been scanned (they are clear) because my husband’s uncle died as a young child from an aneurysm. I’ll keep you all up to date on what happens next. It’s been very difficult living with this extreme uncertainty but we are holding on. My thanks for this venue.

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Hello! It sounds like your son is progressing really well since his bleed and cyber knife. I understand the waiting, I had gamma knife November 2016, but time does pass. I’ve no doubt it’s much more difficult for a parent, and no doubt looking forward to that scan and to see what’s next. You’ve been a member for a bit so you’ll see there are lots of us who have had various types of radiation treatments. They couldn’t easily get at mine, thus gamma. Its nice to have the option! Take are, John.

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Appreciate your words, John. I’m still looking around and taking things in small doses here as sometimes it’s too much so I’m pacing myself. The support though is obvious and I’m grateful for it. Surgery is not off the table in my son’s case and I’m thankful for all the technology that give him, you, and everyone affected a chance. Wishing you the absolute best with each scan. Kelly

Surgery would have left me with vision problems and likely seizure, which are both not factors right now. Felt gamma was less risk however if it ruptures again prior to obliteration(hopefully) they will go in. Absolutely understand the small doses! John.

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Wishing us both all the best during this wait time - thanks so much for your responses.

Best of luck. So glad they discovered the cause of his problems and are doing what they can to cure/alleviate them

Kelly

Welcome to the group! It’s good to have you with us and for us to share a bit of conversation as we walk along. I think it is fair to say that all of us who arrive here come in somewhat in shock and having never heard of an AVM.

Do share a bit of poetry with us if you fancy. While this is a place for supporting each other there is nothing wrong with sharing some other aspects of life as well. I’d love to read a bit of your poetry.

One of my favourite poems is this one and when I was trudging through my initial diagnosis phase thought it reflective of the path I found myself on.

Click the v on the right to read the post or click the blue text to go to the post.

Great to have you with us!

Love,

Richard

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Prayers for you and your son.

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Thank you so much.

Thank you, Richard. Thank you for sharing the Frost poem - one I am fond of, too. My poetry has taken a back seat since this all happened but I know will be there waiting for me when ready. We are currently trying to determine the cause of a very low-grade fever and slight hand tremor in my son - seeing docs this week - all tests so far are inconclusive. Appreciate you all being here & wish you all well through this.

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Keeping you and your son in my prayers. God Bless.

Sharon D…

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Thanks so much, Sharon.

My father died in 1999 60 years old. My dauther bleed in 2004. Fixst with emboliserling and cyberkife. 15 years old now. Have some ploblems with memori and eplepcy. I take a MR last year and they find that I have AMV at the same place. I was operated last summer. I got a bleeding the day after the operation. Was reoperated. To day I an at work. Some problems with my left hand and memori. All my four odher kildren are ceckt out and they are okei.
My dauther was 100 prosent paralysert in her left side. To day she dø bicykling and playing piano.
Soo to all of you. There happend mirucal evry day.
I an from Norway with bad memori and English.
Regards Jørgen

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Thank you for your comments, Jørgen, what a harrowing time you and your family have endured. I wish you continued success with your own recovery. Yes, miracles do happen every day - thank you for the reminder. Best, Kelly

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