Replies to This Discussion

Permalink Reply by Melissa Tolen on January 27, 2010 at 1:38pm

The only reason I worry about my daughter having children is the possibility of her AVM rupturing during child birth like so many other mothers' un-detected AVMs do. That being said... my mom had c-sections, I had c-sections... I guess my daughter can just follow our lead. But, that is so far in the future, who knows what advances in science, advances in childbirth, and knowledge of AVMs may be? Like everything else, we'll just have to wait and see.

Julie Baker said:

I am most worried on whether or not my children should have children. I know it seems early in life to be contemplating this, but what am I supposed to tell them all?

Permalink Reply by Rebecca on January 27, 2010 at 9:59pm

My daughter is 11 now. Although her AVM was removed, she did suffer some damage to her vision. The damage is so minor, but since we will fight for every inch, it does worry me. It will probably never be safe for Dani to drive. She has difficulty negotiating the halls of the middle school and routinely runs into people or knocks things over that she simply doesn't see. We live a rural life and it is difficult for her to imagine life without driving a car. When the time comes I will probably pressure her to go away to a big city for college so she can experience living someplace with an efficient mass transit system. We've talked about how much cars cost - purchase, insurance, maintenance, gas - and how one could apply some of that money to taxis and gas money for friends that give a lift. What I don't think we can anticipate is medical and technical advances that may change our children's situations in ways that we cannot even imagine now. It's most important to teach them to face these challenges and to know that they don't have to face them alone.

Permalink Reply by Melanie & Joshua on May 10, 2010 at 8:20pm

The experts at Children's Hospital Boston told us our son's children would have a 50% chance of having an avm because he also has capillary malformations (several red birth marks)

Ben Munoz said:

Julie, if you are worried about your grandchildren having an AVM, most experts agree that AVM is not hereditary. There should be no reason to worry about your grandchildren having an AVM. Ask your neurologist of course.

Julie Baker said:

I am most worried on whether or not my children should have children. I know it seems early in life to be contemplating this, but what am I supposed to tell them all?

Permalink Reply by erin lyn hurley on December 11, 2010 at 11:13pm

I wish that I had all the answers for you. But I do have some of them. As long as they have no severe mental impairments,there is no reason why they can't have a perfectly "normal" life. Some of their dreams may have to change, like giving up football & playing baseball instead. I wouldn't want to risk a bleed after a tackle. Driving-yes, college-YES!, job-heck yeah. They might not get to be astronauts, but they sure can design and build the stuff for other people to do it. Maybe some of these kids or their siblings will find better ways to treat these damn things without all the complications. Or maybe, ways to fix the damage that does happen. I find that the hardest thing to do is keeping them dreaming especially when they get sick. Sometimes it's so hard to keep them from giving up. I have to almost be cruel to my ison when gets so down. I have to bug him til he fights back just so he won't liethere and give up. I don't intend for him to ever give up.

Permalink Reply by Melissa on December 14, 2010 at 12:23pm

I just recently found this thread and am so glad that there are others who have the same thoughts and concerns.  I feel scared sometimes to continue to have "dreams" for my daughter.  Since she has been diagnosed in August and treated via LINAC in December this site has been great to follow.  Knowing that we are not alone.  People try to be comforting, but really don't understand the depth of fear there is in the unknown we have for our daughter.  We are fortunate in our faith that God allows us to turn those fears over to Him, but He knows we are human and how precious our daughter is to us.  Thank you to all of you for sharing...it really is helping others like me "new" to this area.

Merry Christmas!

 

Melissa, proud mom of Berkeley

Permalink Reply by michelle rodriguez on December 17, 2010 at 5:11pm

 

 What the future really hold for those who are suffering from AVM..,it was a question that i really dont want to answer for my 17 year old daughter.But that was before,she was only 6 when first diagnosed for ruptured AVM at her left parietal lobe of the brain.,she undergo gammaknife treatment twice,but unfortunately it's still there.,but now smaller.The seizure is still there and it breaks my heart as a mother everytime i saw it,how she feels when being ostracized at their university.But she needs to be tough,she needs to prove everybody that she's as normal as anybody else.She have AVM but AVM does'nt have her,i motivate her to continue fulfilling her dreams,taking life as it comes but with some limitations.Big hug for u mama!

Permalink Reply by Tina White on December 17, 2010 at 9:31pm

My daughter suffered her first hemorrhage from an AVM in January 2009. The AVM regrew and required a second craniotomy earlier this year. It's hard for me to know what kind of future to hope and pray for -- beyond the obvious, make the most of the abilities she has and take that as far as she can.

 

In my heart ... I watch girls playing basketball or softball and think am reminded what is likely impossible for my daughter. My daughter has a significant hole in her brain -- probably one-fourth of the right hemisphere. For now, she's a tenacious little girl. She's very determined and competitive. She loves sports and athleticism. I am grateful for those things and know those helped pull her through this crisis.

 

I pray my daughter will be able to live independently, drive a car, get married and have whatever life she can make for herself.

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