Question re: Surgery Choice

I have a choice. Have surgery or not. If I have it it could affect my right arm and speech apparntly or kill me. If the paralysis is permanent or can be physio’d will have to be answered post op.
If I don’t have it the AVM could haemmorage at any time in a couple of weeks or even a couple of years or even more. I have epilepsy as a result of the ops into the avm and they are sporadic.
I need to decide. I think I will go for surgery. Being pragmatic this is more controlled and safe surely and the risk lower. If anything happens then at least I am prepared.
Who else has made a choice. What did they do? I’ve embolisations, gamma knife and apparently this is the last option left or nothing.

Oh it’s in the brain btw.

Austen,
Sounds like you’ve researched the pros & cons of having treatment vs. not, and that’s wise! As patients we always need to be our own advocates and do our research.
I hope you have a well-experienced neurosurgical team in treating AVM’s & having TRUST in your dr’s. is essential.
Best wishes,
Patti

Austen, it certainly sounds like you have done your research, which is what anyone with a serious health issue should do. I didn’t have to make a choice, I had treatment and then had the hemmorage. At one point, I asked my doctor what he would do and I followed what he said. Have you asked your doctor that question? It really helped me to make a decision.

Keep the Faith!

Due to size and location embolization and craniotomy were not an option. No bleed so no emergency. My choices were Gamma Knife or wait. I chose to treat because I have three young children. If my children had been grown I don’t think I would have made the same decision.

I worry you see as to all intents and purposes I’m fine. Living a normal and healthy life. Although I have had one bleed already and suffer seizures and can’t drive now or drink. My consultant has been brutally honest but this is it. If I don’t have the surgery it will happen anyway just naturally. If I do the ramifications could be 0 or massive to me or my family. I’m truly tired of appointments, medications (far too many), scans. I just want to be free.

I just want a straight answer, yes or no from him though. He can do it. But it just feels as if I am going round and round. I know he has my safety at heart and I do trust him. It’s just the unknown factors - the paralysis. Death I can cope with, I can plan for. Normality even better! Sounds a bit too practical I guess but I have been thinking about this for a while.

I have tried that and he said it’s your choice but I can do it. My family won’t help either. This should be a joint decision but without help I feel I am at a loss. Sorry sounds sad but I really am full of beans ususally. I have faith just need some support.

Fore warned - I’m feeling negative and sad today. One year ago I was living a completely normal life. I was a mother, wife, daughter, and Developmental Support Worker. In Decemeber 2010 we discovered something was just not quite right and it’s all be down hill since. I have had CTscans, MRI’s, Angiograms, Xrays, Echo Cardiograms and endless blood work. Three plus hours of Gamma Knife (where I had to be manually repositioned 5 times- NOT FUN). Almost three months post Gamma I know longer work or drive to due seizures. 98% of the time I feel that this is the path I was meant to take and this is all apart of a bigger plan. I am strong, resilent, an advocate and an educator. The other 2% I wish I had never known my AVM existed. Be well Austin.

Austen,

To have or not have the surgery is your decision and sometimes family can’t or wont help in that. The big things like doing your research and trusting your doctor has already been mentioned and yes that’s way important. I sound like a broken record but I’ve always said everyone’s journey is different. Some folks on this site feel like they didn’t have a choice (like me) and some feel they did. I guess what I’m saying is that you have to make the decision based on what you know. We’ll all be here for you no matter what you decide so I hope that helps a little. Best of luck. :slight_smile:

Hi Austen,

Where in the brain is the AVM located? You have had embol. & gamma knife already and they didn’t work for you? Just need to understand. Also what can be done to safeguard you against paralysis of your arm?

I had brain surgery in the left temp. lobe 10 yrs. ago. after many years of bleeds. I also had NO family support but you have us and we all are concerned about you. My biggest issue post surgery was being taken off seizure meds 3 months after surgery. Big mistake. I had a huge seizure and hit my head. Can you believe it? Whatever you do stay on your meds because the scar tissue may create ( as if you don’t know this already ) seizures.

Also, did the doctor tell you that you may not make it? Why?

Julie Kalb

Hi Stephanie,

I’ve had the avm for nearly ten years. I’ve had ops gamma knife, two embolisations and taken more medication than I can imagine. I’m in and out of a and e due to the fits and I haven’t been able to drink or drive. I’m usually pretty perky trust me. It’s just that so many times I’ve had to make a decision that has such a massive effect not to me but for others. It’s comforting knowing there’s people I can talk to. No one else can understand. I’m usually so hearty and full of life and make memories rather than re-live them but this week I’m in the dumps. Just a bit unsure.

Hi,

There is a risk apparently of death (greater with this op one presumes I shall check now you mention it), paralysis or jump up and fine. Well the last bit is obviously a little optimistic but I think the avm is close to certain areas of the brain which control speach and movement of the right arm. The risks went up post bleed and after other ops and due to scarring of the gamma knife. The % of each case I am not sure and will go into more tomorrow. It’s the paralysis and the effect it could have on my family that I am concerned about. Death I have no fear of. I have a beautiful wife and daughter and they’ll be ok. The only time I have ever thought about me is the bit before you go into theatre. You’re left all alone.

Thanks,

Good to talk.
A…

Yes, I get it. I am also very up beat and positive. When I’m not people panic - lol. They don’t know how to support me because that’s my role in most relationships. People ask me how I am and I always reply with a positive. Then I hear about how strong I am. In reality I am very strong BUT I have learned to say the right things to comfort others. They don’t really want to hear how about how little I am sleeping, my headaches, my seizures that trigger aphasia, the wooshing in my head.

Austen,
I understand your concerns about the outcome and how it will affect others in your life. I am struggling with that decision right now too. I’m just beginning my journey but the doctor’s are thinking that surgery is the best option for me. My experience and fears are mostly based on what my mother went thru and how it affected her after her bleed and surgery (she had hers 26+ years ago). She has struggled - total memory loss, total paralysis on the left side (gained it back except for her right hand), had to learn to walk / talk/ etc all over again. Everyone tells me that the advancements have been great but I still have to think and PREPARE for the “what ifs” as I still have a 15yr old son at home. I have no spouse and am doubtful of who would stick around to help if things turned out less then hoped for.
I guess the only thing we can do is the homework and leg work now to prepare for the outcome. I wish you the best of luck and pray for God to guide the surgeons hands. Take care of yourself in the mean time - try to chisel out a little time each day that you just enjoy life and your family and not think or worry about your situation. Being on the other end of it I wish my mother and I had spent more time together before she forgot who I was - because I still remembered.

Thoughts and prayers,
Maria

Hi,

I have seen the consultant now and basically I am going for the surgery. I have the choice to have it or wait and something happens at some unknown point, a birthday xmas whenever. At least this way I can prepare. We all can.
I know the risks. The risk to me is right hand, speech and obviously death like most ops but the risks are greater. Memory too can be affected but with the meds it may not make a huge difference!
Your story touched me. All I can say is ensure you leave the heavy work to the docs. They are the ones who truly have to worry in my book. I know I and or we will have consequences but it’s in their interests to do the best job they can.
I have a 2 year old. I am so scare of her not remembering me. Thank whoever for the digital age. At least then she can say That is how daddy spoke, moved, laughed. My wife and daughter are the biggest things in my world. I live, work and do everything for them. I hope they realise that this is something I am doing for them to give us a better life. I hope that this blip will not linger in our memories and we shall soldier on.
When I heard the news I prayed like never before. Always inclined to have a chat with him upstairs when I’m alone. Pray for them, to ensure they’re ok.
Your story makes me think that I have to be alright only to keep on reading stories and doing the gardening and the bins!
I truly hope that life turns out ok for you. I am scared for them. Not for me.

Austen, I had surgery to remove a Spinal AVM 14 months ago.My big risk was quadriplegia because they had to go in and cut it off my Spinal Cord after embolization. I too was warned about death and paralysis. In my case I prayed very hard and did my research. I found that the Doctors will not want to operate unless they feel optimistic. It is very likely that you will not be 100% or lose some part of speech or movement in right arm although God willing that won’t happen. The risk you run is of that thing bleeding which will be much worse. Me?I lost my job and am on Disability. I have a Median nerve in my left arm that is regenerating and difficulty walking, but, I am getting better physically everyday. I am recovering, feel much better and in two weeks go for the MRI to make sure it is gone. Go for it Buddy and put your faith and trust in God