If you read my previous blog. The day after his surgery in July they did an angio, thought they saw residual AVM, I asked if it is AVM will you take him back into surgery. He said no because it was sitting on an embolized area and was deep in the brain. He said we would probably have to radiate. Several hours later they said it was residual surgical vessels not AVM, but to have an angio in 6 months. Well, there was residual AVM and the neuroradiologist felt it was probably inoperable and we would have to use radiation. The reports where sent to Dr. Spetzler in Phoenix and they agree that it is AVM. I had somewhat wrapped my thoughts around that he would either say lets watch it or yes he needs radiation, that’s when the fast ball hit me in the gut. He said he wants him to have another angio with possible embo and then a couple of days after that another surgery. When I mentioned that before they acted like that would not be an option, they said before it was very faint, but has changed significantly since the post surgical angio. What I don’t get is the location hasn’t changed just the signifnance. So why is surgery the way to go now. The only thing I can come up with is he feels it is changing to rapidly for radiation to help. Has anyone else ever had this situation? Now I’m full of doubt and don’t know what to think. I know he is one of the best in the country and I trusted him with the first surgery, but why the drastic change. I feel like I can’t breath and my heart is breaking for my son. How I’m I going to tell him he has to go through this all again and is it even the right thing to do?

Wow that is awfull . Can you ask him to explain why the change . You need answers !! I’m sorry you are going trough this .

i am so sorry janice,
i wish i had some answers to give you…but i don’t understand myself from what you have explained…why they would change thier minds…i hope you get some answers i have both you and andrew in my prayers xxx

Hello Janice. I wish I had the experience and the words to help but I don’t. I do know that six-months post-op is a typical time for post-op exams and changes to be addressed…even with a hint of or verified sighting immmediately post-op things can change positively and negatively at/by the six-month mark. Seems the length of time required to see what is and is not probable in our status.
You and young Andrew have done an exemplary job these months and it must have been so difficult to hear those words and know you and he will have to re-do your hardwork. I can not imagine the turmoil in your mind and the breaking in your heart and the sckreeching in your very soul over this…I can -as a mother- imagine your staunch determination to understand the why and when of this;I can imagine you compiling the list of questions that will be beneficial to acquiring the answers to those questions that will help you to understand the reason and necessity of the procedure(s) now. I can imagine you doing all you can do to help Andrew to accept and understand this necessity as you have helped him to do all along this shared journey.
There are other opinions out there if and when you feel it warranted…even now if it helps you to help him you can persue that as a means of understanding. The world of avms and micro-surgery is still relatively small and most neuros (surgeons included) are not offended or threatened by anothers opinion as they usually seek others out under these circumstances. That is why if you think it would help in any regard to do so-you should seek another opinion. Even the best of the best are human, yes ?
Janice keep faith in yourself. You will find and do exactly what is right and good for yong Andrew as you have always done. I am sorry for this time you must endure and I hope you ask for and get the explanations you are looking for. You can do this Janice and so can Andrew. Together you are an unstoppable team. You are his mother and that makes you his advocate, alli, guardian, and his very best friend. I am aware that you know all that about yourself but it is difficult to be strong all of the time when you are tired and faced with more decisions and more questions. Perhaps for just a moment you need to breath and clear your head and know that you will do what is right.
Janice, you and Andrew are in my thoughts and prayers and those of many others. Be good to you. Take care of you.

That sucks. Simple as that. I don’t know what to tell you about why they have changed their mind. I do agree though, it sounds like they have reassesed and decided at this point the risk of another surgery is needed. But you need to ask them to explain why they feel differently now. Maybe there is a very good reason. And maybe it isn’t a bad reason at all. Maybe the situation is better than they thought originally so they feel comfortable moving forward.
I can imagine how hard it will be for him to have to go through this again…poor kid!

hi janice…im so sorry to hear this,I had gamma ,radiation a little over ayear ago,my doc here in Florida told me I would have 80 persent shut down in the first year,I trusted him,one year later no change at all,he now says in two years ill see great change in the avm,ill get my check again,but havenow found another doctor to review my reports here in florida,i did learn after thatit does take years for change to take place,after reading many stories here on this site,im happy they can do radiation for your son,its good news really that they can treat it this way,im still not sure why they changed there minds,I am hoping they tell you more sometime soon,hang in there, ok,God is good and he is watching over your family ,caroline

Janice, I"m sorry that you and your son are going through all this turmoil. You are both in my prayers.

Oh my gosh that sounds so rough. I am so sorry that he has to go through this…I am sorry for you and yours as well…Ask your doctor to specify for you why the sudden change has occurred…Ask him for answers…maybe it is a good reason and you will feel better about going forward with it.
You are in my prayers and I hope all goes well here. Keep my posted-

Dear Janice, just now I read this post. It is exactly what happened in my son´s case. After discovering an residual avm, only 5 mothns after first surgery, three doctors were very sure it could be embolised. We looked for other opinions to find out Daniel needed another craniotomy. I freezed. So scary that moment. Well, it is all past now, for me and you. Thank God!! xxx