I went to see a new doctor that specializes in HHT. It was terrible. He argued with me about the existence of my AVMs. He was looking at an angiogram after one of my embolizations. Idiot. I had to explain everything to him. I started crying and he said that he didn’t understand why I was so upset, he was just asking questions. Idiot. I told him I’ve been dealing with this since I was 9. I’m 36 now. That’s 27 years of traumatic interactions with doctors. Sadly, I think he genuinely wants to help, but he’s just clueless. It’s so frustrating. I’ve been passed along to another doctor.
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I am so sorry you had to deal with that bunny! Hopefully the next one will be a lot better. 
Hey Bunny,
This is Merl from the modsupport team.
And I’d almost bet he had no idea what ‘traumatic interactions with doctors’ actually means. I say this because for years (decades) my medical reporting was all taken as an exaggeration "Ohh it can’t be THAT bad…’ ‘…We think it’s all in your head…’ little did I know just how real that ‘it’s all in your head’ line was but everything was minimised. The medicos had already decided. Seems the easiest answer was just to label me a hypochondriac. I gave up looking for answers. So, I ignored it all. Ignored the oddball symptoms. Ignored the signs and got on with the life I had.
I’m driving down the road this day and the lights went out. I couldn’t see. My wife came and got me, went to the hospital, had a scan and the damn Dr comes out with the line ‘Ohh look what we found…’ like it was all something new. I was SO VERY ANGRY. I’d been telling them for years with no recognition, but when they can see it in a scan, it’s like some big discovery. When I told the dr of my symptoms and how long I’d had some of them he then says “Why didn’t you say so earlier?” I wanted to punch the man in the nose. I had spoken up but no one was listening.
So they operated, ‘all fixed’ I was told. But it wasn’t. My list of weird symptoms had expanded. The surgeon told me my new symptoms had nothing to do with the surgery “It must just be YOU” GGgrrrr.
My symptoms increased markedly and he reluctantly operated again, adding more oddball symptoms to the mix. “The scans all look good” he told me, but those scans don’t show my symptoms.
Like you, I’ve been battling with it all since I was a child, I’m now 50 and it all still hangs over me. I still have medicos 2nd guessing me. ‘Ohh, but you have a history of…’ I also have a history of dealing with know-it-all doctors too, but none of them ever identify that fact as a contributor. Am I sensitive to changes in symptoms? Damn right I am but nobody else knows just how bad BAD can be, if I can avoid it getting to that point of BAD of course I’m going to speak up.
I think for many of us with rare conditions our interactions with medicos can be a torment because we’re often not in their textbooks. Sure, if you’ve got a broken bone or a familiar condition they may have the information, but outside of that many of them are as you say ‘clueless’. I don’t think I’d call them idiots, but I do so wish that if they don’t know or are unsure, they admitted it, rather than send us down an unnecessary rabbit hole.
I’m sorry to say, I don’t have any miracle answer. I think the best advice I can give is that when you find a decent dr grab a hold and don’t let go. They can be a rare thing. I had one I had trained really well, he retired and I haven’t had much luck with dr’s since. The one I have now is OK, but is starting to get a bit jaded, but I’m reluctant to have to train another dr. The arrogance of some is simply overwhelming sometimes.
But I can assure you, you are not the only one to have such battles.
Merl from the Modsupport Team
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Unfortunately, even without having the litany of battles that @BunnyFriend and Merl cite, I can also attest to the straight unlistening annoyance of some doctors. My neurosurgeon started my only meeting with him that I had waited six months to have with the sentence “I think this appointment is going to be a waste of time.” 
Well, if he had had his way, it wouldn’t have happened at all; second best would be that it was a waste of his time. However, I did the Jack Russell terrier thing of not letting go, so it was the worst meeting I’ve ever had with a doctor but it didn’t turn out to be a complete waste of time just because I hung on.
My much more limited experience of these people says that a lot just don’t know. Some [general practitioners] don’t know and are happy to stay that way. Others don’t know but are intrigued enough to learn. When it comes to a neurosurgeon or a specialist in HHT, they really do need to accept multiple AVMs as a presentation of HHT. You can have a second bite at this and hang on in there until things change or find a different doctor.
Unfortunately, you are not alone.
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@BunnyFriend I am so sorry to hear about your terrible experience. Sadly there are drs in every field who bad and have non tack. I find so many neuros esp have huge egos and dont like it when they dont know something.
Hopefully the new dr you will be seeing is a better fit. I cant even count how many drs I have fired in my adulthood and that was even before my AVM.
Please keep us updated on your appointment.
Hugs
Angela
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Sorry to hear that you have to deal with someone in the medical field that doesn’t know a thing about what you’re going through. Somebody like who you describe shouldn’t be a doctor in the first place. If i were you I would get a better doctor for a second opinion.
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