Well, we met with our neurosurgeon today to discuss the consults from Indianapolis and St. Louis, and much to our surprise they both came back identical, and both recommended embolization followed by surgery, instead of gamma knife. Now we have new decisions to make. We have been advised that our daughter should be treated before the end of the year, so the clock is ticking. These are tough decisions!!
Hi Susan,
In some ways it’s easier that both doctors came back with the same recommendations. But I know you must be feeling a lot of anxiety about the need for the treatments to start soon, which presses you to make a decision on where the treatments should take place. But if you do some homework and also listen to your heart, I’m sure you will come to the right decision for Lindsey.
Take care,
Debbie
“Tough” is an understatement. My heart goes out to you in making this decision. I guess the biggest factor is that she has had a bleed and the increased risk of having another bleed factors hugely into their decision. Debbie is right in that, it is good that both the doctors had the same opinion. The other positive thing is that she has youth on her side.
Did they give you specific risk factors for the surgery? Our neuro did that for us with repect to my son and I found it really helped having some “numbers” to deal with. There was a percentage for resulting deficits that they expected after the surgery and what the expected recovery would be from those.
I don’t know how you make this decision but please know that I am thinking of you.
Yes, I was thrilled that the opinions were the same. I know that doesn’t always happen, and would make the decision so much harder.
You are right Joy, the bleed does factor into it quite a bit. So does the fact that it is pretty easy to get to and has two draining veins that lead right down to it. It also is in a pretty good location as far as that goes and is a pretty tight little ball (2cm). The Dr. says that there should not be any resulting deficits based solely on its location (left frontal lobe) itself, which is why she had no deficits from the bleed. The potential risk lies in an artery that passes close by and how the surgery will affect the blood flow in that artery. That artery feeds a part of the brain that controls her right leg. He didn’t really give us numbers because it is such an unknown. The other two teams that looked at our films didn’t find it to be as much of a concern, so I guess that is comforting, I think…? We have an appointment with Dr. Smyth in St. Louis, next Friday. Our Dr. here knows many of the Dr.s in St. Louis, and they are telling him that we could do this here as well as there (they have a lot of confidence in our Dr.), but he wants us to at least go and sit down with them. Then we will decide if we will in fact do the surgery, and if we will do it here or there…yikes, my head is spinning! Thanks so much for your support through all of this, it means so much!
When I had the bleed, it didn’t go into a problem area but getting to the AVM and the doing the surgery is what caused problems for me.
Susan:
I am curious, did you see doctors from Indianapolis Neurological Center? My daughter has had 5 embolizations. Her neuoros are from that group. We are now at the stage of deciding on crainial surgery. We are in the process of seeking a 2nd opinion from Cleveland Clinic. Have you spoken with a surgeon at Indianapolis? I am curious who that is/was and what your thoughts are. Our surgeon is Dr. Troy Payner. We go to speak with him again about surgery next Friday. They too have told us not to wait too long. I really want to know about his experience - how many of these surgeries has he performed in the last year, but no one can seem to give me that number. So, we have reservations. I had the wonderful opportunity to speak with an avm survivor who had cranial surgery just 2 weeks ago. She’s doing great. In great spirits. She went to Cleveland Clinic and had wonderful results.
If you have any questions regarding an embolization, please feel free to ask. I have lots of info to share. Goodluck, take care.
Rhonda