So I waited, again, all day for the phone call about the knee. I put in my reminder call at 10 this morning and again at 4pm. I was told they would look it over after their patients.
The call came at 5:20. It was from the surgeon’s PA who does know Meghan and has sat in on her cases from the start. The doctor doesn’t make the phone calls- ever. I must admit for some reason I did not tell the PA that I was holding a copy of the report as she spoke to me. I really wanted to hear what she had to say.
Actually what I REALLY wanted, was to hear, “You have a stable AVM.” Let’s look at it again in 6 months. I would have been jumping up and down. I am beginning to like ” 6 months.”
That is what I was ready for – but this is what I got…
“We reviewed your daughter’s MRI and it is normal.”
NORMAL?
“Yes it is a normal MRI.”
DO YOU MEAN THERE IS AN AVM THERE THAT JUST ISN’T GROWING?
“No we don’t see an AVM.”
THEY TOOK 5000 IMAGES (and that this point I wanted to shout that the damned report cites a 2.8 x0.7cm mass, but I didn’t) ARE YOU SURE YOU LOOKED AT ALL OF THEM?
“Yes, there is no evidence of an AVM. I know you wanted Dr. K in Boston to review these images..”
NO, I NEVER EVEN KNEW THERE WAS A DR. K IN BOSTON UNTIL YOU TOLD ME TO CONSULT HIM! SHOULD HE REVIEW THE IMAGES?
“That is up to you.”
WELL WHAT ABOUT THE FACT THAT THERE IS A PALPABLE MASS ON THE INSIDE OF HER RIGHT KNEE ABOUT THE SIZE OF A PEANUT?
“Oh, you should bring her in so we could look at that.”
IT HAS ALWAYS BEEN THERE!!
“Bring her in so we could look at it.”
(In my own mind…you have a CD ROM with 5,000 images. You have a report that says there is a mass, but yet somehow you pointing to it and saying, Yep that’s a mass is going to make this better?)
I walked for about 2 hours after this call. It took that long to shift my emotions from irate to angry.
Once again with my back against a wall, I will call tomorrow for an appointment.
Another wasted day in NYC with its pricey parking garages, and doctors that are supposed to really give a crap. Another day of summer burned for nothing.
Starting to feel like I am in the Twilight Zone.
Thanks PTEN. Thanks Cowden’s Syndrome. I like you about as much as Dr. R. – and right now that isn’t saying much!
beatingcowdens 