Hii, 21 transgender girl here from Costa Rica, with a 5 grade AVM in my left occipital, parietal and temporal lobes and my life just ripped out again. See, I’ve been seeing 2 different doctors since my diagnosis december last year… and the two of them have completely different opinion. I’m gonna list them and their characteristics so you can help me judge who has a better opinion:
Dr. A: He is a young chinesse man who studied both here and in Italy, says my avm is large but treatable, and says my AVM is not delicate but can be reduced. I showed him my MRI results, analyzed them a bit, and said my AVM is treatable with embo and gamma knife. So he told me to talk with Dr. X(man in charge of my case in the public healthcare system) so we can discuss angiograms and further solutions.
Dr. X: He is an old really conservative and religious man with lots of experience and it’s considered an eminence in the field all over the country. He says my AVM is too big and complex to treat by any methods, but is too stable that it will probably never bleed(as he said, grade 4 and 5 AVMs almost never bleed) so it’s better to leave it there. He said dr. A is pretty new to this stuff and should not trust him.
This is just so confusing, as those are two really different opinions. Maybe I’ll explain some other different aspects of both so u can help me with an idea:
Dr. A:
Middle age man, studied in both Costa Rica and Italy, is newer to the field but studied newer studies on the subject.(i guess)
Works in different mid-high end private clinics
Has few patients, so we can talk and discuss for hours.
Offers assistance in brain AVM but doesn’t say he treats them(in his pages)
It’s more open minded, something important as I’m transgender, and despite not knowing about how both conditions can interact was open to future solutions with the help of an endo.
Dr. X:
Older man, studied in Costa Rica. His studies point to the 90s but been actualizing himself with different courses through the years.
Works in a big private catholic hospital and in the main public hospital in the country. Is always saturated with patients and is hard to get a full and extended appointment to discuss different topics.
He doesn’t offer anything related to AVMs appart from consultancy.
It’s more conservative in general. I was the one having to explain him what being transgender is, and when I ask him about my sexual practices(me being polyamorous) he asked me if I believed in god.
Maybe I’m a little biased here but it’s so confusing. I know Dr. X has way more experience but I feel very uncomfortable wirh him, like I can’t be totally open. And it seems Dr. A is all wrong. Idk what to think…
In comparison to my own - mine was so cut & dry. Finally got to BNI - it went like this - “Sir, we’re gonna try our best” - there are no promises - or, you’re gonna die
Ummm, well - get at it
Going on 5 years later post hemorrhage, I’m still a walking miracle
This in reality was just out of this world terrible - but, I wasn’t left with choices or opinions of different MD’s - I actually, even after this long & hearing folk’s stories like yours, etc. still find it a “easier” route
Barrow is supposed to be as close to as good as it gets, but even they have varying opinions between other facilities.
Unfortunately, yet again - I have nothing insightful to add. But, it’s really tough to hear people’s situations for me. Every case, every neurosurgeon & so on are so different. Being left with this as choices is just mind numbing.
But, as far as the US is concerned - I put barrow #1 on my list of AVM patients. If it wasn’t for them, I doubt I’d be here typing away after working a 10 hour day in the AZ heat.
wish it was that fast. My process has been really slow compared from others in here that enter the surgery room not even a month after diagnosis. Maybe it’s the size or the system in here.
Dr. X says is amazingly hard for it to bleed maybe that’s why he wasn’t concerned but idk if that’s really the diagnosis.
I just had so much hopes and future plans after Dr. A said it was treatable and just waites for Dr. X to start planning treatment.
But again, Dr. X always ruins everything. Now I don’t even know what to do. Barrow could help for a thrid opinion but even if all neuros agreed it’s treatable Dr. X is the one with the last word.
Aggghhh at this point I’m just really tempted to buy a rum bottle and just take all in
If it helps to have an account where treatment was not fast, mine was not fast! At least, I was dissatisfied with the speed!
I could hear my AVM and initially it was very quiet. I’d say the first time I heard it was summer 2015 and I was seeing the doc for something else, so I asked if I had wax in my ears because I could hear more goings on inside my head when lying on a pillow at night. No significant wax, so I parked my concerns.
A few months later, it was louder, so I started googling the noise I could hear. I finally found a webpage on the American Stroke Association website about AVMs, DAVF, pulsatile tinnitus (what I could hear) and stroke and went to the doctor! It took a further year of being referred to hospital, getting scans done, being referred to neurosurgery in a different city and then waiting on the surgery schedule before I had an embolization in April 2017.
I’m intrigued when you say one of the doctors doesn’t offer anything related to AVMs other than consultancy: do you mean he doesn’t do surgery, just talks about it?! That doesn’t seem very useful.
Hi Qqquinn, first of all just want to say I’m really proud of how courageous you are in many ways. Second, your post reminded me so much of my experience with my spinal AVM. Different specialists with differing opinions, based on their own experience and maybe their own personalities as well (more conservative vs more risky). I was lucky because even though I had a “team” of doctors , one time we asked whose opinion to follow, one of them said he speaks for all 3 so basically just listen to him. It’s hard when there’s not an obvious right or wrong path. You’re just dependent on these professionals.
It sounds like Dr A asked you you discuss w Dr X ( who is the authority with more experience) so personally I would go w Dr X but maybe I’m not reading all the nuances correctly. I’m also the type of person who feels more comfortable w experience even though that not necessarily means they are more skilled. Plus I’m spinal so don’t have background in your type of AVM. The part about Dr X talking to you about god, ugh, so uncomfortable. I’m sorry you had to go through that. Well those are just my thoughts, your post really got me thinking. Sending you lots of hugs.
Hi Quinn,
Just a reminder you are amazing, brave & strong enough to get through this. It upsets me to see Dr X speak poorly of Dr A and this without any other consideration tells me his motives may not be true. Can you confuse your life a little more and go for a third? I like Dr A, new doctors have new information and current findings, they are eager to learn and tend to research more. Some old school Doctors are stubborn and set in their ways, don’t like considering anything outside of their own opinions. Does Dr X do treatment or surgery? You stated he is consult only?
Tash
And yeah it’s such a burden. I feel Dr. A as u said is more YOLO style and has more recent studies in his experience.
The thing I like about dr. X is his view. He said my AVM is REALLY unlikely to rupture as I don’t expose to risk factors. But despite his long experience he seems to be a bit lost im more modern stuff that could affect me. Things like panic attacks, hrt and sex where a “huh? hmmm… emmmm” moments. I’m looking for a foreign thirs opinion on Barrow to see what they say.
Idk what does looking down on another doctor says but I agree on the new doctor stuff. Researching, Dr. X got his degree on 1998(although he appoints some other more recent conferences and courses). Maybe I gotta research on how the general view on AVMs has changed in recent years and get my third opinion.
If we combine both their opinions: My AVM is pretty unlikely to rupture due to it’s type but it can be slowly removed without much complications considering it’s position.
Second, your post reminded me so much of my experience with my spinal AVM. Different specialists with differing opinions, based on their own experience and maybe their own personalities as well (more conservative vs more risky). I was lucky because even though I had a “team” of doctors , one time we asked whose opinion to follow, one of them said he speaks for all 3 so basically just listen to him. It’s hard when there’s not an obvious right or wrong path. You’re just dependent on these professionals.