I guess I’m as excited as one can be with a son with an AVM. The Dr. said the angiogram revealed that it’s 2.2 cm and on the outside of his parietal-occipital lobe. Only one feeder in and drainage out. It’s fed by his PCA artery.
He said, if you have one, this is the one to have ideally. Of course, relief only comes when it’s gone.
Now, we will meet with the neurosurgeon on Tuesday and make a date for surgery.
Prayers for all of us dealing with this because this is no easy road.
Lisa
We are with you every step of the way. I hope that learning about it and getting better clarity on it from the neuro helps to rationalise it and that helps calm down a bit.
You’re right, a craniotomy is a big deal but lots of people here have gone through it and done so really well. He’s young, which has to be an advantage, and technology and capability for doing this sort of thing has never been better.
My grandfather was born in 1892, fought as a sergeant in the trenches of world war I and by the age of 29 was having migraines and nosebleeds on a regular basis. His health was so bad that he was never enrolled in a pension scheme. Even if they had worked out that what he had was not one of the many strange afflictions with which many men came back from France in 1918, they never had the technology nor capability to do anything for him. I am just grateful to live in an age when we have such wonderful ability to do really positive things about an AVM.
I’m in the hospital myself on Tuesday for several hours, so it will be easy for me to spend some time thinking about you guys.
If it helps, when I was heading in for my embolization last April, I was quite nervous about it, about possible complications. I know your son is in for a more involved procedure but having been through that once, I’m perfectly happy to go through it again. It is the unknown that makes it so scary.
So don’t worry about what you don’t know. The pathway through hospital is all done for you. The doctors and nurses do this often enough that they know the plan for the day and they’ll just take you through each step. All we have to do is be good patients and carers and do as we are told.
That’s how I look on these things, anyway.
Very best wishes
Richard
Great new Lisa! Tuesday should be a good day, get the date established will be a big deal. Thinking of you and your on, John.
Thank you for your thoughtful words.
You are right, technology has changed everything. I feel a little more at ease. When the possibility of losing your child to an unknown malformation happens, it gets scary. I just don’t want to make wrong decisions.
I’m so happy that I found this group and all of the knowledge and support that has come with it.
I’m so thankful that we found it before a rupture.
Are you in the hospital for your AVM? I hope you are doing well now. Prayers to you for a speedy recovery.
Lisa
Thank you so much! I do appreciate all the encouragement I get from this sight. It helps tremendously.
It’s nice to have people that understand to chat with.
Thanks,
Lisa
Not in hospital today but going in on Tue for a scan to have a look at what’s going on. Tuesday is going to be a great day.
Yes!!! Prayers for no AVM!
Amazing news Lisa!
As you said couldn’t wish for more that your sons AVM being easy to get to and a small size and with not many feeders- Lots of very positive news!
I will be thanking of you both and @DickD on tuesday
Very best of wishes
Corrine
Thank you!!!
To be honest, I hope there is a little something there because that means there is something to fix. I think I shall be in a very strange, unsatisfactory place if nothing can be seen. But I completely appreciate the thought!
Oh, I just don’t know all the facts. Is there a possibility that the AVM is not transporting blood now?
I’ve no idea what’s going on in my brain but it doesn’t feel normal. I can hear a bruit or pulse, I get fullness in my ears and increasingly, pressure (or at least a feeling of pressure) in my head. It could be the embo I had has sprung a leak, so the blood is flowing directly artery to vein again or I think it could be that having fixed one area, the higher blood pressure in my arteries (pressure as it should be, rather than being lowered by the AVM) has led to another AVM becoming apparent. Doc a couple of weeks ago said that would be “vanishingly rare” but we know some pretty rare people here, don’t we?
As a former patient, as opposed to a doctor, this AVM is about a 3 on a scale of 10. Mine was approximately an 8.599877654 :).
Don’t want to minimize things. Surgery and recovery will be very unpleasant. I’ve been asked more than a few times what was the worst part of recovery. My answer is always: the foley catheter for the bladder. Just let your son know, it doesn’t go through the ear.
But overall this is about as good as it gets! PLUS, again, your son is very young. An enormous advantage.
Keep us posted!
Did you call your Dr.? That sounds like an emergency to me. Of course, I’m a panicked mother of an AVM patient.
I haven’t thought about that. Maybe they’ll do it when they give him anesthesia. I can’t even tell him that.
Im trying to prepare myself for recovery by saying it’s not easy, but I have no idea.
Where was yours? It was complex? Did you discover by chance or the worst way?
Thanks for reaching out,
Lisa
Like I say, I saw the neurosurgeon 2-3 weeks ago. The session was greatly pointless. However, my experience of seeing doctors about my AVM has been that the neurosurgery department only consider you to be urgent if you’ve near enough got a bleed going on. In this regard, if I believe them, I just cope with the base symptoms until I get to an appointment. I obviously described my symptoms to the neuro when I saw him and he was not the slightest bit motivated.
So… I see a different person on Tuesday and I’m actually up for a scan. So, I hope there is something small, discrete, not too dangerous or difficult to deal with that we see on the scan.
If I panicked about it, I’d have been panicking since I first went to see the doctor about a degradation in my symptoms in November. You can’t afford to panic for anything like that length of time. Obviously, if I felt my symptoms were suddenly debilitating or immediately serious, I’d be off to the ER. Meanwhile, I have to be patient.
I just hope I get a good step forward on Tuesday… I hope you get a good step forward on Tuesday, too.
Very best wishes
Richard
Mine was deeper in the brain in the back on the right lobe. Plus there was more than one feeder. It took a while for them to dig around. But when they did resect it…all was well!
They do insert the foley after he’s under. It’s just a little uncomfortable when they remove it.
There’s really no way to prepare as a patient or parent. Just have to be informed and put your trust in the surgeons and nurses.
Mine was discovered by chance after I got a second opinion. You can read the entire saga in my profile if you’re bored.
In what part of the country are you?
Bill
I read your saga. Jeez, what a way to find out. I guess we will take the finding any way we can.
We are in Shreveport, Louisiana.
Hey Dick,
My situation is not AVM related, but certainly brain related
I can say this is not just with AVM’s. I can be very symptomatic but unless something shows on a scan they can be very dismissive, which can be very concerning as at times you feel like you are walking on egg shells in that “…is this a concerning symptom or not…?” My wife is VERY proactive/protective, always ready for an issue. But personally I look for a progression in symptoms, if issues are increasing, then act.
I hope Tuesday brings you some resolution either way. As you say “You can’t afford to panic for anything like that length of time”. But that constant apprehension can be just as debilitating.
Merl from Moderator Support
Praying for you and your son’s future! There is always risks associated but I hope everything goes well.