Good morning, glad to be here. I hope to gain some insight on these growths I have.
I found out I had them 2 days ago. I had a seizure and wound up in the hospital. A neurosurgeon told me I had a total of 10 in my brain, 1 in my brain stem.
Good morning, glad to be here. I hope to gain some insight on these growths I have.
Hey @Crit99 it’s good you found us, though it is always a worrying time that brings people here. I’m very interested to know what your doctors tell you and I’m confident we will have a group of people in a similar situation to you.
Having an AVM is a frightening experience, so I can’t really imagine how you feel to be told you’ve got rather a lot of them. Kudos to you! (if that’s the right way to put it; it isn’t quite but honestly I hope you’re doing ok and I tip my hat your way).
Just a quick hello and welcome! Hopefully we’ll be able to help out some. I hope you’re adjusting to the Keppra well. Quite a number of folks here are on Keppra and other medications. I had one brain AVM, so quite different than multiple. I ended up having gamma knife as a result. Take Care, John.
@Crit99 Welcome to the group , so glad you found it. So sorry to hear about all your avms.
Dr. Michael Lawton is the number one surgeon in the USA and he used to be near me at UCSF but now is in Arizona at Barrow.
If I ever need surgery or when my Stanford Neuro radiologist surgeon retires I will be going to him,
They do remote consults and Arizona is not that far from NV.
This is a safe group and very supportive. When I found out I had already had a massive stroke due to five blood clots and had been in a coma. I wanted them to just cut it out so I could plan my Christmas party which they said no we are going to do an embolism .
I was happy to come on here to find out more info and have a proper freak out.
The problem is we all look find and non avm doint quite get it which is fine cause who wishes this on anybody.
Hi Richard, thank you for the warm welcome. I wish we were all here under better circumstances but a positive, we can learn from one another.
I haven’t met yet with my doctor to discuss what or how they will help me. The only thing I know is that I was born with multiple AVM’s in my brain. I didn’t even know it, and this was the first time they started to act up. It was a shock to me, I thought I was going to be spared, but not so lucky.
Anyhow, glad to be here.
Hi John, thank you for the welcome. I am glad you got help, I hope you are doing better. As for me, I am going to keep moving while I can. I have a son with autism and he needs me. I believe God will grace me with many more years.
Hi Angela, wow, you’ve been through a lot. You are still here and that’s great! I appreciate your kind words, I have no way to go but up, life is too short to be miserable.
I am glad to be here, and look forward to learning from you.
I don’t know how new this post is but just 10 avms? I have multiple and no dr to help me out. I heard of drs at Arizona and such but unless it’s right here in my town forget it. I am not rich nor do i like to travel anymore. Anyways welcome.
Welcome to the family and sorry to hear about your recent diagnosis… I’m sure you will find this place beneficial to seek opinions, advice and even comfort.
Please keep us posted on your journey and sending prayers your way for a full recovery… God bless!
Hi Adrian1, thank you. I wish I were here under better circumstances. Anyhow, it is what it is…. I do have questions, I hope someone can help. Ever since I had my incident, the feeling in my tongue is odd. I can feel pain, but it also feels like it’s asleep, like tingling.
I also read my labs, call me ignorant, I guess, new to this but I didn’t know my bleed was labeled as a stroke.
I wish I was able to speak with my doctor, I can’t wait until October 13th.
It’ll come round quite soon. If it is any consolation, I self-diagnosed my AVM (because I could hear it) in April 2016. It took until the August to be referred to hospital. I was referred to ENT initially so then he sent me for an MRI (which took another month) then a further month for him to read the results. I was referred to neurosurgery in another city and saw someone there for the first time in November 2016 and it took all the way to April 2017 to get to the front of the queue: I was able to have an operation to embolise my AVM. But it took a year!
It’ll be interesting to understand whether your doc wants to operate or just watch yours.
Hang in there. 13 Oct is pretty close.
Its understandable to read your results, however I can say from first hand experience I read my CT report the day they found my AVM and didn’t think it was a big deal at the time… well I was very wrong.
If you have any funny feelings or changes you should definetly speak to your medical experts to make sure everything is ok… God bless!
Hi Adrian, thank you for the helpful information. These AVM’s run in my family unfortunately. I thought I was going to escape the curse. I wrote my quest down already for my doctor, we’ll see how my visit goes, and what he can do for me.
I am definitely worried but I have to keep living.
Hi Dick, I am glad to read you took care of your AVM’s. Did you have a lot? As for what my doctor thinks I should do, I will find out soon.
You’re in a very rare minority. Most people here, I should think, have just one AVM. Some will have a few. Very few people have a lot (and 10 or more, I think is a lot).
When you have just one AVM, it seems to me that the considerations are around where the AVM is and what it is affecting as to whether and how to treat it. Doing a bit of brain surgery to remove or block up or irradiate an AVM is feasible. Not always feasible but often. However, it will be interesting to see if your doc decides there are any of your AVMs that it would be beneficial to attack. You may be better with them left as they are. There may be one or two that are worth acting on but since you have so many (and especially if they are in your head) actually operating on them one way or another may not be the right thing to do.
Note: I’m not at all a doctor: I’m surmising these things from reading other people’s stories on here for the last 6 years.
It’s good to have you with us and I’ll be fascinated to understand what the doctor says about you.
Very best wishes,
Thank you for the warm welcome. I appreciate the wisdom you have to share with me. Such as yourself, I too am interested in what the doctor will share with me. I am very afraid and sad at the same time. I have a grown son with autism that I worry about. I know this doesn’t need to be a death sentence but it does make me wonder. For now, I will continue to keep my head up and live, I can’t afford to play a violin.
I think these things shock us enormously. I got to 50 before my diagnosis and honestly, I took my health for granted all that time. It shocks you. But I think it can lead on to a revelation and a realisation and hopefully determination to value everything we’ve already done a lot more than we had, and to value everything else we do rather more, too. There are good things to be learned from this experience.
Wishing you the best,
I too will turn 50 in December. It’s crazy how I never knew these ticking time bombs existed. Our bodies are definitely amazing, the fact that these AVMs had been dormant for so long.
Fortunately, I have my faith which keeps me grounded, boy does it help out on my dark days.
Anyhow, as always, I thank you for your optimism. I pray that God watches over us all.
My philosophy is that we all have a handful of stuff wrong with us. It just takes some people longer to find out what their full list of troubles are (and I feel completely blessed to get to 50 without the slightest worry. Completely blessed). I can honestly tell you that your fifties are a bit of an eye-opener in this regard and everything your parents told you to do that you didn’t starts to remind you of the words they spoke… … and some other things that start to go awry as well. It isn’t pretty.
Hi Everyone, I had my first follow up visit today. My doc basically told me that one of my AVMs bled in an insignificant part of my brain. He doesn’t want to mess with anything, just wants me to continue taking Keppra, and come in every 6 mos for MRIs to monitor me. He said to go about my daily life, not to restrict myself.