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Icy's Crappy Health Updates


Iceheart
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35 minutes ago, Iceheart said:

Pretty much.

Okay, my mom keeps saying that it’s still better wait times than Canada. Canadians, is that true? I feel like that is not true.

I’m not Canadian, but it’s not true. Pretty much all of the nonsense about Canadian health care being awful was made up by health insurance companies in the US. One of the men who was a big part of it now is fighting against his own lies. American healthcare is horrible.

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I just had the absolute worst PT appointment. 

I've hated this place from the very start. I insisted I go, against my doctor's recommendations, hoping they could get me exercising again. Oh no, I was instructed to walk five minutes a day during the first appointment - which I've been doing - and he doesn't even bother following up on that until today when he was mad at me for not increasing my distance. No other exercise. This guy is all about making small movements to affect the body, which has done, wait for it... nothing. I'm sure you could figure that out.

And then he tells me that I clearly just want to do absolutely nothing for myself and just lay around like a log and hope that surgery will fix it... uh NO, I CAME TO YOU FOR EXERCISE HELP AND YOU GAVE ME NOTHING. 

Also, yeah, actually. I am so burned out on being in pain and having to keep up my work schedule that I am very much looking forward to the extended recovery time of surgery, because at least people will let me rest.

He also kept trying to tell me that the pain wasn't anything to worry about and that I can't do anything to make it worse... when my condition literally worsened rigth in front of him, wen I first started it was only my left leg that was bothering me, now it's both legs.

And then he tried to talk to me about starting a mindfulness meditation practice, and the stuff he said I just couldn't wrap my head around... like, I literally could not figure out what he was talking about. And then he got mad about that, because he was trying to HELP.

I'm seriously so down about this for some reason. I mean, the feeling of dislike is mutual, but this guy made it so much about him and all my shortcomings that I can't shake it.

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Better news today from spine doctor #1! Since I respond well to steroids, he's going to try epidural steroid injections. And I get to have the first one on Monday.

If this works, I'll be able to be a lot more active. If it doesn't work, at least I tried!

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Epidural was yesterday!

As far as procedures go it was non-traumatic, but starting about 12 hours in I feel like I have an iron helmet squeezing my head and pushing down on my neck and shoulders. I got about three hours of sleep last night because of it. It's still going strong.

I think people on Facebook think my updates on this are about my second Covid vaccine, so yeah, I get to go through this all again next week. Thankfully the day after my MRI, not before. It would suck laying in an MRI for an hour and a half with Covid symptoms.

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The worst headache I've ever had was after having Noah, and it was because the anesthesiologist nicked my spinal cord when inserting the epidural. I was slowly leaking fluid and the pressure change was excruciating. It leveled out while I was laying down though, so I would feel 1000x better while horizontal. But it's something to be aware of. 

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Yeah, they briefed me on a dural puncture, but my headache got worse when I was laying down, and got better once I finally got about 14 hours of sleep... but of course I then go to work and have to lift heavy boxes and the headache comes back again.

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They found a mass on the brain scan. It’s super fun learning this through MyChart and not from a doctor so I can’t ask questions.

So, I asked Dr. Google. It might be malignant. Thank you Dr. Google, you think everything is malignant, moving on...

It’s probably a cyst, which is the least surprising thing ever, as I have three cysts in my leg alone. Next up is a CT scan and a CT angiosomething, and a follow up MRI in three months. If it stays small and unobtrusive, they just monitor it. If it gets big and crazy, they remove it. I’m not looking forward to a potential head shave, but it is what it is.

And now I have to wait for three weeks to see the surgeon about my back.

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I have done the absolute opposite and googled every single term in the report. It‘s sitting right in the area that controls the legs, and I wouldn’t be at all surprised if it’s the cause of a lot of my leg weakness and balance issues. But it’s super easy to remove. If it is what they think it is.

The epidural seemed like it worked for a couple of days, but a few jolts to the lower back and it’s right back to pre-epidural pain levels. I don’t think it was worth the side effects. But hey, I tried.

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I admit I Googled it too after I saw your Facebook post. I agree, it sounds "less" complicated to remove and potentially benign (although I'm sure they are going to biopsy to confirm). I was also wondering if it was part of the cause of some of your health issues. My mom had pretty seriously neurological issues (neurofibromatosis), and the first hint was that she started stumbling. Her tumors were never malignant, so don't worry too much about it yet.

I can't believe that got pushed to you on MyChart. When I found out I had a melanoma, my doctor called me and held the results on MyChart until she talked to me.

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Small thing or not...if I found out I had anything growing on my brain I would flip the fuck out.  I can't think of a worse place for something to just be growing.  I am sure there are worse places and it really may not be that bad...but still.  Between that and finding it out through an online app is super shitty.  I can't even imagine.

Props to you for holding it together...

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  • Iceheart changed the title to Icy's Crappy Health Updates

It's 3pm and my doctor hasn't called yet. If he doesn't call today, I doubt I'll hear from him before Tuesday, because I happen to know he's working trauma on Monday, the scheduling nurse told me.

He's lucky I'm on a lot of psych meds.

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That’s what I think. That’s what’s keeping me calm. But I used all the free time he’s giving me here to finally call up a picture of the brain with the arteries and get a visual of where this thing is - it’s on the front of my medulla (just the most important part of the brain), so close to THE ARTERY THAT SUPPLIES HALF MY BRAIN that the radiologist first thought it might be a pseudo aneurysm.

I’m still strangely calm about this, but I really, really want to talk to my doctor about this just to hear him say I don’t have to worry, y’know?

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