So I've seen 3 different doctors - got 3 different opinions - and went last week to yet another. This last doctor is supposed to be "the best" in the NW from what I've heard. However, I didn't leave the appt with any more guidance on a decision on what to do. He said it's my choice. I'm not having symptoms and it appears to be stable right now ~ so can I live with knowing it's in there? OR do I want it out because it's all I think about and there is a possibility of a bleed? Well... If the choice is really up to me how do you decide?
I've asked as many questions as I could think of and I just got the same response - it's your choice.
Here is what I know:
Right frontal lobe
In front of the pre-motor area - apparently "unused space" as he put it
It's 5-6 inches long
2 inches deep
"on top" - I guess meaning it's not deep in brain
There are vessels from the left side that are affected and would need to be dealt with in surgery
Appears to be stable - no kinks or aneurysms
The latest neurosurgeon described it as rather large, complex, complicated, yet he felt it could be removed.
Oh! and if I want him to do the surgery I have to get it done by the end of January because he is leaving the hospital and moving to California.
So...how do you make a decision? Anybody else in a similar situation? What did you do? Did you regret it?
I don't want to be disabled ~ I think that's my biggest fear. I have 1 teenager at home and one that is going to college to think about. My mother - who also had an AVM (it bled due to a blow to the head) and had surgery 30 yrs ago is limited on what she can do to help. My sick / vacation time won't cover the entire time I'm off. I just don't know what to do ~ sometimes I wonder if it would've just been easier for me not to have known or if it bled and I didn't have a choice. :0(
Yes, it can be frustrating & confusing making the right choice for you and I sympathize with you.
Two of the very top questions for me personally are: EXPERIENCE of the NS treating vascular malformations & TRUST in the dr. & his/her team & of course only the pt. can make that decision.
Is it possible for you to connect w/ this drs. pts. who have been in your similar situation?
I've been extremely fortunate in knowing of my Stanford NS for many yrs. & having what I consider a 'sacred TRUST' in him that allows me the peace of mind to follow his recommendations. So for me, no, there are no regrets.
I hope you too will be able to make the choice & decision that feels right for you & have the peace of mind you need in doing so.
Like Patti said, trust in your doctor means the world but ultimately it is your decision. Don't be afraid to ask questions to help you with this decision, and then ask again if necessary. It's a huge decision and not something to be taken lightly. Doctors just want to help you get well and you deserve answers to all your questions. Every AVM is different and circumstances are unique but if it helps, I had a daughter who was going into her Senior year in high school. I had to think about what was ultimately best for her and I thought the surgery (which removed the AVM) was worth the consequences of a possible bleed. Also, I'm so glad your mother is still here with us but also consider that there have been so many advances in surgery over the last thirty years even since my operation (2006). I hope that helps somewhat. Good luck with your decision and know that no matter what choice you make (yes I'm a little biased towards having surgery), we will always be here for you if you ever need it. Hang in there and know that we got your back!
First, can I ask what doctor's you have spoke with. Second, being in the medical field I know you won't get a definite answer on wether to do it or not because ultamitely it is your choice. You are probably right in some ways it would have been easier not knowing or having the choice made for you, but that can come with a price, too. One thing you said that puts up a red flag is that your mom had an AVM, also. Although rare there is hereditry conditions that are associated with AVM's. You might want to have your children tested if they haven't been already. I wish you luck and peace with your decision.
At OHSU - Dr Aclan Dogan, Stanley Barnwell, and Johnny Delashaw. All are neurosurgeons. Dr Delashaw does over 800 surgeries a year, I've been told he's one of the best in the NW
I saw a Dr at Kaiser but his name escapes me right now - he was also a neurosurgeon.
When my mom's AVM was discovered she harassed them for years on whether or not I should be checked. They always told her no that it wasn't hereditary. Since the discovery that I do have one we have talked to several of the neurosurgeons and each have said something different. One Dr said that in his entire time of doing this he has never met a mother & daughter that has had one - we are the first. Some have said yes it could be hereditary & others have said no. My oldest son has had a CT Scan on his head before we discovered mine and nothing was ever said that it looked abnormal. I will be talking to my youngest son's pediatrician to get one scheduled for him soon.
In all the people I've seen Dr Delashaw gave me the best "vibes" - even my mom who has come to all my appointments said the same thing. He does over 800 surgeries a year. He was also recommended by another surgeon on the East coast (a friend of my mom's dad).
With all the HIPPA laws and other legal issues I don't know how I would find any of his past patients or how to contact them.
Thanks for the good thoughts & wishes - can always use them :0)
We have had medical care with Dr. Delashaw. Our daughter has CCM and was having seizures and after emergency room and another neuro we were sent to him. He immediately did surgery and removed the malformation in her temporal lobe in September 2003. She has had no complication since. He also diagnosed the rest of the family, my husband, and youngest son . We have the familia cerebral cavernous malformation gene. My husband treatment on the other hand was very poor and for several years his seizure and condition went untreated and our last visit he was told to "Go Fish'in". That moment in 2008-2011 my husband suffer seizures , loss of memory, anxiety, confusion, hearing and a loss of quality of life. Patti helped us to find Dr. Steinberg/Stanford. This past August 2011 my husband had 3 malformation removed in one surgery. One in the temporal lobe causing seizure and hearing loss and two in his frontal lobe cause memory, confusion and emotional trauma. He is 64 yrs and after 3 months he is his old self. Full of live and clarity and no seizures..I send this message with mix emotion regarding Dr. Delashaw. I know he is the top fish at OHSU. He also comes with a high ego. Know yourself and understand and communicate you needs and concerns clearly. I wish you health and peace..