So, Megan, my 12 year old daughter, saw a pediatric neurologist today, and it is confirmed that she has either an AVM or a cavernous malformation. A cerebral angiogram is being scheduled to determine our surgical options. It sounds like regardless of what it is, it is going to be removed, because its location makes it more likely to bleed. I feel somewhat shell shocked. Does anyone have any advice…
Take a breath! Where is it? If it isn’t deep they can probably remove it! Writedown questions as they pop in your head, so next time you see the doctor you will get lots of answers. Read a lot of what other people have had done, meds. taken. We are here for you!!! your not alone!!!
I know how worrying this is for the family. I have survived for 59 years now and had a very nasty avm which was operated on in 1976. Surgery has come a long way since then. Yes I am still not 100% and never will be. I held down a job for 25 years, ran a guest house for 10 years, married and had a child. This has not beaten me and never will. Give your daughter the courage to live life to fullest.
Great advice everyone.No one says you can not be shell-shocked especially concerning the health of your child. But if at all possible, try your best not to let her see you shell-shocked even if it is your best acting job. From everything posted by others, putting up a strong and supportive front can be very helpful and even comforting for those going through the AVM (or cavernous malformation) journey. This is not to say that you can not show concern (that may be impossible and even detrimental) but being both as positive and supportive as possible goes a long way. This site and these members can absolutely help with that. Good luck Megan's mom and know that we are all here with you. :)
Megan's mom, you may wish to join our Parents group so you can talk with parents who have been in your situation. Just click on "Groups" at the top of the page to find it. Best wishes to your daughter on her upcoming surgery!