I called Loma Linda hospital based on a recommendation on this website for Dr Reinhard Schulte (he says he is not there anymore but answered several of my emails)
He recommend Paul Jacobsen, MD
I sent an email asking I need an embolization m
They told me the best Dr for me is Dr Daniel Hoss
I researched him he’s 36.
What is the best age for neuro interventional radiologist?
How old is too old
How young is too young?
Here is the link to my angiogram.
I checked the images today and I understand why vision is a risk, it’s so entangled between the nidus.
I need to come to terms that in order to save my brain, I need to lose some vision. How much, I don’t know, God knows, but I cannot risk my entire brain because of peripheral left vision.
Anybody cares to tell me if this AVM is good for embo?
I see what the doctor says now, risk, there is risk.
No doubt about it.
But I am not waiting for hemorrhage.
Please guys, if my rationale is totally incorrect (based on ansiety)
please let me know
Today I contacted UCLA, and I think if they are the best of the best, let’s just do it there.
Let’s not take any chances here.
Rafa,
Those of us who discovered our AVMs before they bled have all been in the situation you are in: some impossible choices between operating or not operating and then between the options for an operation. It’s not a nice choice and it’s not an easy choice but it has to be your choice.
Suddenly, what we took for granted has changed. Our health is not as good as we thought it was and, worse, having an operation is not risk-free. So doing something about it carries risks, just like carrying on without an operation carries risks. So you’re stuck between a rock and a hard place.
The only thing to do is to satisfy yourself on a couple of things:
Do you believe you need an operation of some kind?
Who is giving you the best, most realistic, feels right kind of information on what they’ll do and what the risks are? I feel we have to be confident in the doctor and some of that is age or experience but some of it is just how you get on with that doctor.
I’ve read through your initial post now and I can relate a little more to your position. My DAVF was discharging into my right transverse sinus (the vein you can see going horizontally on your scans, I think) and the level of flow I was getting was enough to cause retrograde flow or reflux (backwards flow in the sinuses) so I had a similar feeling of odd pressures on the top of my head. So I know a bit what that feels like.
It’s an impossible choice but the main thing is to be comfortable with it yourself, for whatever reasons drive your need.
Don’t rush into it. Take as many opinions as you want before you go ahead. Ask the doctors about urgency. Quite likely, the docs will be quite calm about it. My DAVF felt like it was changing quite quickly as the pressures in my head changed from month to month, so I was quite keen to get sorted, but it may not be changing so much for you, so don’t feel obliged to rush ahead with fewer opinions than you’d like.
Hope any of this helps. It is a very difficult time that many of us have been through 
Very best wishes,
Richard
Hello everybody.
Next week God willing will be my surgery at UCLA.
As a human I have made mistakes, but I cannot emphasize enough how much this site has helped me.
I decided
So with that said I made the decision to urgently call UCLA and God willing next week is my embolization
I thank everybody here, why take a risk with my life
Let’s just go to the best neuro hospital country wide.
Thanks I hope everything works out next week.
I cannot live my life chasing tails begging doctors to please show me next steps etc etc.
In California, UCSF, UCLA, and Stanford all highly ranked neurointerventional centers.
I wouldn’t worry about the age of the doctor. Younger doctors have a bit more stamina for long procedures, and are more cutting edge with newer methods. Older doctors have a wealth of knowledge and experience. The group I go to all work together so you get the benefit of both. My surgeon is younger and had done great with me.
Don’t rush, you’re being pretty aggressive with meeting with Doctors and getting second opinions, which is good. I remember being in that situation and being nervous. But you might not be in immediate harm. The doctors you have already seen should be able to give you a measure of urgency. Take the time to make sure you feel good about the doctor and hospital you go to. This is something worth taking some time to think about.
I think it’s going to work out fine for you.
Rafa,
Couple of things…
You’ve definitely got some of the best neuro centres around, so no worries there. I agree will all that Taco says, so check his response above again.
If / when you go for the surgery, don’t expect some kind of miracle cure. Both Taco & I have struggled quite significantly post embolisation. It’s a very uninvasive way of having neurovascular surgery but what it does is rather immediately change the blood pressures in your head. You’ll have quite a headache post op because the doc just injected a bunch of foreign material in there and your brain goes “WTF?!!” and your pressures are all different, so don’t expect it to be all easy. If you follow me & Taco, you’ll spend several months getting used to how everything feels. Ok?
It’s great you found us. It’s great to be able to encourage you that you can get through difficult times like this. Don’t rush into it. Just get comfortable that the docs you’re talking to know what they are doing and give you the best confidence. I had to wait 5 months to get into the operating theatre, so if you go in next week, I’ll be a bit jealous, but then healthcare is free in the UK, so there’s a balance there.
All the best! Keep in touch with how you get on. We are all interested and we’ve been through the same stuff.
Best wishes,
Richard
Also worth mentioning is that I’ve had about 4 procedures. And it’s gone both ways, I’ve recovered almost immediately from some where it was like nothing happened and I’m magically better, and others where I had issues for months after.
Well thanks guys. I feel this is going to be a difficult year but at the end of the day better to treat this than just do nothing about it
Then neurosurgeon that operate on my sister insists this is too big for Gamma Knife. The neurosurgeon from CHOC thinks this is very favorable for embolization.
Now if the guy from UCLA says otherwise I’ll be surprised. Embolization has pros and cons. The fact that it reduces pressure to those veins is the reason why I am doing that. Less pressure there and less volume. Then 6 weeks later I’ll be in another situation with different choices.
Good to hear you found a place @UCLA. Not sure if you have seen this previous discussion, but please consider what was discussed here RE: embolisation alone as treatment. GK Embolization alone DOES NOT obliterate an AVM
Yes I know it does not obliterate all of it
But it has advantages
reduce the flow
reduce the volume
The doctor said it is possible mine will be obliterated with two embolizations
Gamma Knife may not be needed
That is the reason he wants to do that he sees it’s just one feeder and then another small feeder really close to the surface.
My doctor is going to be
Dr Reza Jahan
He has been in UCLA for 20 years.
Anybody knows if at UCLA they have numerous interventional radiologists? At Hoag they just had one, same at UCI. So that’s why I felt going to another hospital was better.
UCLA seems the best hospital in California for Neurospecialists.
I have had embolizations and radiation. Mine is in the left frontal lobe. It was large too. First 2 embolizations and then 1st radiation treatment after a few weeks. Then my 2nd one 6 months later. But between the waiting period of having another angiogram, it had recruited 2 new feeders. My doctors decided that that was the result of an area not being treated in the 2 places that overlapped during my treatment. Anyway, I had another radiation treatment and another embolization. Unfortunately it is still there. This journey started in October of 2012 and continues till today. So frustrating. I was fortunate enough to not have rupture. That is the worst possible way to find out that you have one. I had a seizure that led to my diagnosis. My seizures have gotten more frequent. But I think my epileptologist might be on to something with my medicine combination. Everyone is definitely different.
How big was your AVM?
yeah it could be so many things but one thing I know is that when you start treating it at least it’s under observation/treatment.
It’s better than just “observing it” like Aruba recommends.
I believe in the beginning it was 5.25 cm. Not exactly sure. I do know it was over 5. It is a lot smaller, but still there. In the beginning it was not advisable to remove it. It was in the area that controls my right side and speech. My doctor said if it were him he would go with embolization and radiation. It could have paralyzed my right side and messed my speech up. Not something I would super happy about. So I went with the other.
Hello friend. I am a 39 to female with a 4.6 cm AVM to my left occipital lobe. I had gamma ray X 3 last April. I unfortunately had a bleed a few weeks ago, the bleeding stopped after about 5 days and I was given a choice to do embolization. I took the chance and did it. I haven’t had my follow up get, that will be a few weeks from now. I can tell you I lost 25-30% of my peripheral vision to my right eye. It is like am aura - like sparkles. I also am reading some things incorrectly. I will let you know what happens after my follow up. Good luck to you and God bless.
Hello.
You mean last April as in April last year?
Or this April you had Gamma Knife?
First of all I understand your concern because of age & embolization’s &surgery. I was 54 years old when I had my four embolization’s before removal of AVM I was scared & worried also. Dr Chris Baker was my doctor who removed it, along with Dr Hellinger in Winter Park. They’re excellent doctors you will get the best of care. Doctor’s are so advanced today that pick a great doctor & worry less.
Hi,
I had radiation last year April and I had my bleed March 2020. Going for a follow up in a few weeks. I’ll keep you posted <3
God be with you 
Bu
i had gamma knife on 9/16/19, had a follow up MRI, waiting now for my first angiogram after gamma. Don’t know when it will be because of Covid19. Prayers for you. Oh yeah, my AVM is in my occipital lobe with a high flow aneurism.
So Dr Chris Baker did 4 embolizations on you?
I am doing embolization today.
He said it will be 2-3.
Then hopefully we can completely obliterated this thing.
He is also going to do a dry run to see if it will affect my vision.
Then he will do general anesthesia.
He seemed very confident in what he does.
Thanks for your support everybody!