Overdue PB update

Just wanted to give a way overdue update to you all. Definitely been a couple of frustrating months since the liver embolizations. Although those procedures were pretty successful, the constant pain and issues with my legs have not gone away. This has been going on for almost a year now and I've seen every possible doctor you can think of:

- rheumatologist

- vascular

- neurologist

- neurosurgeon

- orthopedic surgeon

- etc.

For a brief while they thought the issues were stemming from my cervical spine and all the trauma I had from accidents. I saw a neurosurgeon a few weeks back and he unequivocally decided that there's no way, even though my spine is a giant shit show, that it's causing the pain in my legs.

I did see a neurologist at MSK last week and he is pretty convinced the issues are stemming from another rare condition I've had since I was a kid called a Chiari malformation. Basically it's like having a rope between your brain and the bottom of your spine that's too short and being pulled. Basically my cord is pulling my brain down into the canal. What's happening now is that the cord has been stretched for so long that it's starting to fray in the lower middle of my back. They call this a tethered cord. I'm hoping to find out this week if this is real and something that can be dealt with or if it's just another theory being thrown out by the doctors.

This sounds a bit scary but to be honest it's way better than the alternative of this pain being caused by my cancer or progression. It really doesn't sound like that's the case at the moment so we should celebrate that.

In other news I'm going to MSK again today for an MRI on my thigh and hip as I had an EMG last week and they found that I have neuropathy in my lower right leg. Basically one nerve seems to be completely dead so they just want to chase that down and figure out what the cause might be. The theory is it's something in my hip. My theory is this is probably something that happened from the moto accident a few years ago that's been undetected.

I also have to drop off my urine sample so they can test my serotonin again. As most of you know from following this blog, my serotonin is usually extremely high, which causes a slew of symptoms.

To add something light to this post I'm going to tell you the wonderful reality that is my life. Two weeks ago I went to do this test, which requires that I pee into a jug for 24 hours. No not straight; who the hell could pee for 24 hours lol, but you do have to collect all of your urine over that period so that they can get an average of your serotonin. This test is not really that bad but there are a bunch of things you can't eat for a couple of days, can't take any pain meds, not even Advil or Tylenol, and a bunch of stuff you have to avoid before you start the collection, which has to start at a specific time and end at a specific time.

I set myself up last week to have it all planned out to do it Sunday morning, drop off the sample Monday morning. I do my first pee in the morning and then put the container in the fridge. It has to be refrigerated so this is not an option to avoid. About an hour later I go to get the jug to put in my second sample and learn very quickly that the jug was defective and dumped pee all over the inside of the refrigerator door. Fantastic way to start today lol. Not only do I have to repeat the test and avoid all the foods and drugs, etc., but now I have to clean up a giant puddle of my piss.

At this point in my life, stuff like this is just comical. I can't even get upset at it. I guess that's me growing up and accepting that things could always be worse.

Anyway as always thank you all for listening to my rants and my shit. Hope to keep you posted with better news in the coming weeks.