New AVM Patient - What Questions should we be asking the Doctors?

Shannon has be Diagnosed with an In-Operable AVM in the Central Portion of her Brain on July 1st of this year and we are as of the 7th of July starting the Appointments with Doctors about her Situation and We would like to gain Knowledge from this Community of the types of and Specific Questions we should be asking her Doctors so that we can better understand what she faces and her treatment(s) including the risks and benifits as well as what she can expect for results from each. Any insight anyone has would be great. Thank you and God Bless.

I copied this from a previous post.My friend Patti Gilstrap did compose some questions which might help you… One of the questions I would consider the most important is, how many AVM patients has he/she treated? Outcomes of surgeries? Does he/she anticipate any deficits? If so, will there be therapy available in the hospital? Does he/she have other AVM patients willing to share their experience(s) - someone you can connect with? Keep asking away - this is a GREAT website! :slight_smile: I agree with Ron…if possible get a 2nd opinion. My Insurance co. at the time allowed a 3rd opinion. And I chose the 3rd doctor! Take notes and make certain someone else goes with you to the appt. You will be scared and they may hear something you do not because you are worried. YOU ARE NOT ALONE!!! …

Thank you Barbra, We do appriciate it. This is Bob, and Shannon is My life, My heart and My soul and I do not know what I would do without her. We are in Kentucky and she is being treated at The University of Louisville’s University Hospital and the the Brown Cancer Center.

One Question, what do you mean by “deficits”? Do you mean like loss of something?

Hi Bob. I am going to send you a friend request so I can message you and Shannon privately. Look on the upper right hand screen underneath inbox you will see friend request.

Bob and Shannon, I had an MRI in June that revealed a possible AVM in the left cerebellar peduncle area. Like you, I have been doing lots of research. I believe I have been having symptoms of an AVM for some time before I had the big headache that sent me to the emergency room. The idea of the AVM was a bit overwhelming at first. I realize now, that finding a good doctor that has as much experience in treating AVM’s are the most important decision that you will make. I have my first appointment at Duke University on Tuesday. I wish you luck in your journey! Sandy T/Hinton WV

Hi shannon I am so sorry to hear about your AVM. My husband also has a very large in operable Avm in the middle of his brain he was told it was the size of a golf ball and had several Hemmorages He was very lucky His first hemmorage was over 14 years ago when he was 36 yrs old he had several experment operations to help re divert the blood flow around the Avm were they glue the week spots I think that saved his life It was done In ny colombia universary by Dr spellman.