Crazy swelling

This post was moved in hopes of @joanie receiving replies

I am dealing with some crazy swelling over my right eye when I have headaches – looks like an inverted tornado - we call them my horns. I am wondering if it is similar to what you are discussing?

Joanie, I’ve been coiled four times with a couple of added other devices, ballon assist and Neuroform atlas stent. I’ve never had any type of swelling from any of the procedures, except when a femoral entry was used and then only at that site. Hopefully, you’ve gone to your doctor by now…

Going to a Dr. next week, finally… so disenchanted with the medical field

I was brought up with the theory ‘The Dr knows best’ and we often put all of our faith in them, but then when they don’t know or put it back on us, the patients, we start to question that knowledge. They don’t like being questioned.

Here’s my advice:- Go to your appointment, but don’t go with any expectation of obtaining answers. If you get an answer, that’s a bonus, but having an expectation, only to be let down, can be soul destroying. Some make out they know-it-all, but the reality is that nobody ‘knows-it-all’. No 2 brains are wired in exactly the same way, so what may have a minimal effect on me could be catastrophic on another. Often they like to draw parallels between patient ‘A’ and patient ‘B’ but the reality is that we are all individual and drawing such parallels doesn’t take ‘You’ into consideration.

I can assure you, you are not alone in your disenchantment. For those of us with rare conditions, that disenchantment is rather common.

Merl from the Modsupport Team

I remember back in the late ‘80’s meeting my first specialist who told me that I was to ask questions and not assume she knew everything. It was a shocker to say the least! In the years since, my experience has been that most, not all female doctors are more open to answering questions. We no longer have to have the attitude our parents had back in the day of the doctor knowing everything, they are human after all. I’ve also been fortunate that of the male physicians I’ve had, be they specialists or the GPs, they are also open to questions. I’ve had two males and one female physician that wasn’t open to being questioned.

What I do, is take my list of questions and usually BH if it’s a longer list and I’m having off days. Always take BH for new appointments so BH can be my translator until we know the doctor can understand me. I also tell the doc what my expectations are, if they can’t meet my expectations “like fix it” they will tell me. The only problem I have is finding the right specialist for ongoing pain in my tibia…guess an ortho is in my future😂

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