My daughter was diagnozed with an AVM in April of this year after a seizure. We have been treating with embolizations all summer with Dr. Scott, Dr. DeNardo and Dr. Millimed. Our surgeron is Dr. Payner. We are scheduled for a 5th embolization this coming Friday. It has been such a long road. I have such reservations about all this. They tell us that because of the number of feeders to the AVM that my daughter will probably need to have the cranial surgery.
I’ve read many stories and have heard about many individual’s situations in my area and my concern is that we are doing the right thing and have the right doctors in the area for the surgery. It’s not that I don’t feel they are qualified, it’s just that we were told this would probably be taken care in the summer and here we are still treating. My daughter’s life has been put on hold since this all happened and I would like to see her to be able to be just like any other teenager. My real fear is the crainial surgery - how is this going to effect her with school and later in life.
Any advice that anyone can give me would be helpful. ’
Hi Rhonda. First of all, you need to know that we have all felt exactly as you do right now- so afraid and unsure because there are just no quick fixes or easy answers when it comes to AVM’s. My son was 17 when he was diagnosed and I felt/feel so badly for him to have to deal with this at such a young age.
As far as your daughter’s treatment, you have started on the way to her becoming AVM free and that is a huge step to take. All you can do is go forward positively and ask as many questions as you can. SO much depends on her AVM location, size, if she had a bleed,etc. All these things factor into the type of treatment recommended. Some people do have embolizations and then have radiation treatment so you could ask if that is an option for her? Maybe you already know this?
I think it is good that they are taking their time with her treatment. I think it is hard to know when they are doing embolizations, just how much will be needed and it all has to be done so carefully so maybe that is why it is taking longer.
There may be others on here who have had the same doctor care as your daughter so that might make you feel better hearing from them, so wait and see for that. I am in Canada so cannot help you with that.
Rhonda, you are not alone in this. We are all here to help you in any way that we can. Remember that each AVM case is different and believe in what you are doing for your daughter. I think you will find that this group will help you alot. It has certainly helped all of us.
My thoughts are with you.
Dear Rhonda, I know exactly how you feel. My son had two craniotomies and it was very hard for us to decide on it. But we had no other options, in his case embolisation was not a option. One thing I have learnt from our experience, get as more especialist opinions as you can. You need to ne sure the doctor treating your child got many cases of successfully treating avms. Lot of love.
I know the waiting is so tough. I keep thinking we will hit an end point, and then the wait continues. I think it is just the nature of trying to deal with AVMs. My daughter is just 10, and I also hate that she has to go through this, but she is doing great. My daughter has to have gamma knife and they don’t do that in Knoxville, so we are trying to find a new doctor for that with the help of our current neurosurgeon. I know the stress of wondering if you are choosing the right one, the right place etc. Like our neuro said, these things are not black and white, you have to get opinions and settle on one that feels right to you and you are comfortable with. It is not a fun journey, for sure, but we’ll make it through!!
i really feel for all you mums out there…i know how much this journey has broken my mums heart …i think this journey is harder on our love ones than ourselves…as far as the surgery goes…choose a surgeon you feel comfortable with …everyones surgery is different and outcomes are based on many factors …size …location …complexitythe waiting game and the unknown are the hardest of all …just remember we are all here for you and wish your daughter all success for treatment of her avm …as hard as it is just stay positive and believe…believe all will be well …my prayers are with you xxx