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AVM Survivors Network

I need to rant

#1

I have been bitter these past couple of weeks. I’ve had around twelve appointments since after Christmas and I despise appointments for so many reasons. The first reason I hate appointments is I feel like all these appointments that I’m having are useless because I have this vibe that my doctors have no idea what to do. For example, two days ago I sat down with the radiologist and talked with them to see if any of the risks have changed. My AVM is located in the Basal Ganglia of my brain which that means that Gamma Knife could paralyze me from the head down. The doctors said “we honestly don’t know if the risks have changed for Gamma Knife.” The second reason I loathe appointments is that it magnifies my difference majorly and I hate that. I know I am different but I feel like these doctor’s appointments are making my difference a bad thing. My question to anyone who reads this is do you feel the same way?

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#2

@LoganW I am so sorry Logan. The facts are these are super rare and you need an AVM jock! Dr Michael Lawton of Barrow in Phoenix does remote consult - He is the best in the United States and he will tell you exactly what to do - I think its 150 and you send the scans

Hang in there
Hugs
Angela

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#3

@Angela4 Thank you so much for recommending a doctor for me, Mrs. Angela! I just wish I lived close to him so it would be more convenient for me and my family.

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#4

Logan,

Hi. I hear your rant and I don’t know what the answer is but it is absolutely ok to rant.

Angela’s point is that Dr Lawton can do an assessment of options for you by email / through his web site, so it doesn’t matter how far away you live for that. If his analysis says he could treat you with lower risk, then sure there’s a whole bunch more to consider for your parents as to how you might get treatment so far away from home; but the initial “second opinion” is much more accessible and affordable than a hike across country.

It might be worth talking to your parents about getting a top clinic like Barrow to do a second opinion. I think it costs as Angela says somewhere between $100 and $200, which for neurosurgery is a complete bargain.

In regard to the dozen appointments, I can see why that would get you down and make you feel different. The only idea I have got is that everyone is different somehow, it’s just some people’s difference is less obvious. If I’m honest with you, I like being different. When I was at school, people were either of the conformist kind and flocked together or more inclined to be different. In general I found “the sheep” to be the less independent thinkers and I was happier to be me and be different. I’ll admit it’s a lot easier to fit in but I think its just as good, if not better, to be you and be proud of being you, without having to fit in. It takes a strong character to stand out at school. Very strong. But you can do it.

Hope this helps a bit,

Richard

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#5

Thank you, Mr Richard! This helps a lot. I like being different, too, it’s just that the doctors are reminding me of a person who picked on me last year, which I stood up to him so don’t worry about that! I would like to thank you for responding to all of my posts and all of your responses help me.

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#6

Embrace your “differentness” Logan. It’s what makes you who you are. When you get older like me and look back on your life you’ll be happy you didn’t conform to be like everyone else. Feeling different because of a disease is unfair. You need to find one doctor who makes you feel hopeful and confident in your future and whose opinion you respect. Most often you won’t find him/her close to home. I saw many, many doctors trying to find hope and solutions for me and eventually found him away from home. He saved my life; I continue to consult with him to this day. Maybe you could google Barrow, as suggested, and find out if an on line consult is possible and how you could set it up from your own home. Or ask one of your many doctors to help you with it. So many doctors (most of them) know so little about AVMs and appts with them ARE a waste of time. Sounds like you could use the advice of someone in the know. Good luck to you. You sound like a nice guy.

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#7

Yes send your images and reports to Barrow through their Second Opinion Program - they are amazing and experts with AVM’s - people head there from all over the world.

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