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AVM Survivors Network

Frustration with Drs

Good Morning everyone,
Today was an especially hard day for me. I am in a three step process to receive radiation (masking fitting, angiogram, radiation). I have finished my mask fitting and I am now in the process of scheduling my angiogram. As I’m sure all of you know whether you yourself have an AVM, a parent or family member, a nurse or in the medical field, receiving proper treatment is a marathon not a sprint. I am frustrated because again today I was reminded how much you have to devote to your treatment, to the point where so often you feel like you cannot have a life outside of you illness.
I have planned to go away to NYC to visit friends for memorial day weekend. The nurse insisted that I must appear for my pre-op to my angiogram on a specific designated day and time, otherwise my procedure would be pushed back another 3-4 weeks. She stated this pre-op appointment would take no longer than 30-45 minutes. So now, I have to leave NYC early, spend more money out of my pocket just to show up for a 30 minute pre-op appointment.
I so often feel like I have to bend over backwards for these neurosergons, radiologists, physicians assistants, etc. I have had an AMV for the past 20 years. Now that I am an adult and still living with my AVM. I cannot drive, I cannot hold down a consistent job due to how much time I miss because of my medical teatment, including appointments, procedures, check-ups ect., and now, I have to give up the one vacation I take a year (because of my flip-flopping of jobs due to my AVM affecting my work) to come back for a pre-op.
I am usually not an emotional person. Two decades of heart ache has helped me learn to be tough, but this morning (and even while typing this post) I broke down.
I feel like I cant say no. I feel that if I do, I will never recieve treatment and I will be postponing the day when I hear, “its gone”. But I am furious. I am irritated. I am angry. To have doctors demand time and place with little notice, I feel like I cannot have a life outside of my illness. I’m lucky to have a supportive family, but honestly, they will never know what this truly feels like.
This is what we deal with everyday. Seeing the finish line in site but it being pulled further and further away.
Today is a bad day.

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I know exactly what you mean. My holiday / travel insurance has a couple of clauses innit about pre-existing medical conditions and in-patient treatment that between them might just scupper me going on holiday abroad this year.

I’ve been waiting for an appointment to check out my residual issues from November round to March, finally had a near-nugatory meeting with the neurosurgeon at the beginning of March and cam slowly (oh, so slowly) having scans to see if there is anything left in my brain to sort out. If there is… Bam! I’m on a hospital waiting list for an in-patient procedure and off goes any chance of a hokiday. If there isn’t, I’ve been hanging around for over 6 months and still don’t feel right – a bit of a “no outcome”.

I am sure, however, that the nurse is just being realistic about the waiting list for an appointment and honest rather than trying to taunt you! I’m not a lucky person. These things are bound to fall when you don’t need them.

It’s good to have a rant about it occasionally, though. It’s part of what we are here for.

So… what did you do? Are you sticking to the earlier date?

Best wishes,

Richard

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DickD,
I’m sorry to hear about your situation. I have also had to put a lot off due to my AVM. The nurse was direct, and I appreciated (for once) getting a straight answer, it is just difficult to hear when you have other plans going on in your life.
I put the post up a purely therapeutic because sometimes its just nice to let it out. I am coming back from my vacation early. Like you said, sometimes the most frustrating thing is the long wait to get the medical attention you need. I felt like if I didn’t take the opportunity, no matter how difficult it came about, that I would only be postponing my treatment and, in the end, that is first priority over everything. These are obstacles we all face.
Thanks for your reply,
Chelsea

You’re absolutely right. Here is a perfect place to shout out when you need it. You’re among friends and hopefully, never the worst off. If you lean on me a bit and I lean on you, metaphorically, we won’t fall.

Well done for sticking with the date!

Richard

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So sorry @creed2 Here is a funny story on the opposite side-
My last angiogram- I was so busy making sure I had everything planned and taking care of cause I was so sick from my first one cause I am deathly allergic to Iodine. I forgot to take the life saving meds before hand. I had even arranged for my gf who worked at the hospital who was good friends with my surgeon who mind you is the founder and head of the dept at Stanford to be in the room with me.
My angiogram was the first one of the day so 6am and my family and friends were all there and when the assistant dr was going over everything he said oh and you took the steroids right…I said oh no I forgot…( cause no one told me why I needed to take them) He then told me why…I said oh well this is a teaching hospital…so you can just bring me back to life…Well they had to cancel my appt and reschedule for 2 weeks later…
I felt like a huge asshole…
Everyone was very gracious about it including my gf who again agreed to be in the room to hold my hand.
This stuff is very frustrating and because we look fine and people cant see it and dont understand AVM and how our daily lives have changed so much .
Hugs and best of luck. I love NYC one of my favorite places!