How do you figure out who to listen to? Does anyone else feel like no one is in the drivers seat. I have four doctors who I have been seeing/consulting with for my AVM. Neruo interventional radiologist, surgeon, allergist and primary care. For the most part they don’t communicate and often give conflicting advice. I can totally see why people pay for concierge doctors. What I wouldn’t give to have one doctor coordinating all of this information and helping me to make big decisions. I just hope as I continue to gather information the big choices become more obvious!
Same feelings here. i also went to see a lot of doctors, only to find out there are a lot of different ways and opinions to treat the avm. Confusion everywhere. Unfortunatly there is not one solution so i had zo gather as many infos as possible in order to add them to what the docs told me…haha im not done yet…mountain girl, u said u went to an allergist. i was wondering why you would go and see an allergist? i was also thinking that i am reacting allergic to a lot of things and if embolization would be a further risk. anything to do with that?
Check out my page and blog for the whole story..but it was apparent almost immediately post embo that I was having an immune response of some sort. I thought I was allergic to the glue. Still dont know the whole story, but the allergy guy thinks he is on the right track. If you think you are having an immune issue, find the best allergy dr. in your area and go!!! US news has a top doctors list that might lead you to someone.
Initially I figured it didn't matter when I got my AVM treated. But after the craziness I can totally see the value in finding an institution that has a 'TEAM" of doctors that are routinely working together to tackle AVMs. It just stinks that most of us don't realize this until we are well into the process! Not everyone will seek out a support group like this one right from diagnosis. Instead they wait until they are having problems.LIKE I DID!
Hi Mountain girl - The whole thing of whom to listen is for sure confusing when you have conflicting information, and there doesn’t seem to be much inter-doctor communication (or communication in general) going on.
I’ve come to the conclusion that it’s like you’re the CEO of your own life. Everyone on your team might give some conflicting information; somewhere in all of the information, there might be some consensus; and, ultimately, it’s your decision to make.
I try to keep in mind that the people who you choose to be on your team are only human; although it would be convenient to treat our doctors as Demi-gods, they simply aren’t; however, they lend an invaluable perspective. It gets super-confusing when these perspectives totally contradict with others.
Ultimately, I would listen to your gut as the deciding factor, taking the different views into consideration.
I know that you’ll make the best decision possible for yourself. Hang in there.
Hi Mountain girl,
Yes, I think most of 'us' can relate with your topic! :0 Words can't do justice to the frustration we cope with along with our diagnosis & decision making.
Find the dr(s). who you trust the most, or get along with & communicate with the best, but do your own research, be your own advocate & don't be afraid to disagree (in a respectful manner! ;)