Hello All

Comment

Comment by Michael William Butterworth on March 18, 2010 at 4:14pm

Our son who will be twelve next week was diagnosed with two avm's last April. we were made to feel that he was the only child with an AVM. it has been a difficult road. but I'm glad to see that we don't walk it alone

Comment by Liz Sonalia on March 16, 2010 at 1:43pm

Hi Kate, I think you were in prepping next to us this morning
My son Charlie is here @ barrows too for surgery with Dr Spetzler. I hope to meet you and your son!

Comment by kzl on March 10, 2010 at 12:46am

Thank you all for your wonderful words of encouragement, it's a good feeling to read such wonderful stories. Everyone is so positive. We leave to California this coming sunday to go see another neurosurgeon and see what he recommends. We are having issues with the insurance here in texas and dad has insurance in california so we are hoping that this doctor is a good one.

Comment by Andreas Juul Sorensen on March 8, 2010 at 8:03am

Hi

I was diagnosed with an AVM in July and will have treatment (embo + surgery) next week. I think the worst moment was actually when I got the diagnose.

What happened to me is that not knowing anything about it, the thought about brain surgery is scary. In my mind it was equal to death or serious neurological deficit. It vaires by size and location of the AVM, but my risk is only 5%. Then one can think about the 5% and all the bad things that can happen related to the 5% - but I prefer to think about the 95% chance of success and that 95% is a high number.

I know it is easy to say - but if you have not done it already, I recommend to understand the exact risks....

I think mentallity is all in these cases. I severely broke my ancle in October and was sure I would never be able to walk properly and have a lot of pain and swellings for 1 year....6 weeks later I was walking, here 5 months after I don't feel any pain at all!!!! I spend too much time worrying about what could happen worst case.

Again easy to say, but I truly recommend trying not to worry before it is actually necessary

There are tons of people in here with positive stories, I actually believe there are more people with positive stories than negative ones....

Good luck with all and best wishes for you and your family!

Comment by Susan Troop (Lindsey's Mom) on March 8, 2010 at 6:55am

Hi there! I know exactly how you feel right now! My 10 year old daughter had a hemorrhage last July, and just had her craniotomy in January. The journey from discovering the bleed to treatment is a very difficult one. The thought of a craniotomy on our sweet children is almost too much to bear. However, I want you to know that my daughter did great with it! she bounced back very very quickly, and now, you would never know that she had a craniotomy so recently. There are very many stories of hope with children, on this web site. The great part about surgery, if he is a candidate for that, is that the AVM will be gone, and you will no longer have to fear another hemorrhage. Our daughter didn't have any deficits from her bleed, but they told us we wouldn't be so lucky if it happened again, so we were thankful to have the surgery. You have come to the right place for encouragement and support. I will help you in any way I can. Let me know if you have any other questions! Hang in there! Our prayers are with you and your son. If you haven't already, you may want to join the parents group on this site as well!