drwex: (Troll)
[personal profile] drwex
When last we left our hero, he was feeling unhappy with the preliminary diagnosis.

After two weeks on ibuprofen I was not getting significant relief. It worked better than the naprosyn, but it wasn't ending the situation. So I went back to the Ortho who prescribed me some prednisone. He and I had a long discussion about side effects and possible outcomes and agreed to give it a try. I got a pill pack with a six-day "supply" but with a complex timing and tapering dosage such that I took 6 pills the first day and one the last.

tl;dr, this shit is amazing. I can see why people get addicted (psychologically) to it. About half a day in I was whining about how my pain levels were back up because I cut out the ibu and about 1.5 days in I was like "holy shit I don't hurt that much anymore." The steroidal anti-inflammatory brought my pain levels down from baseline 4 with frequent 5-6 to baseline 2 with occasional 4-5. I was also (by day 3) hilariously wired.

No, I mean this was hilarious. I was PLANNING ALL THE THINGS at once and was semi-convinced I could pull them off even though it depended on just the right combination of... yeah, that. The jitters and slight inability to sleep were annoying but I wasn't sleeping much anyway, so who cares, right?

Sadly, as I tapered off the drug around day 5 the pain started coming back. I had a bad night and went back on the ibu. I need to have a conversation with the Ortho about what's the right way to manage this - I clearly got some substantial improvement with this medicine but it's also probably unsustainable. After a week on it I'm at a better baseline than I was before, so maybe we can do week-on/week-off or some other regime that'll slowly improve my quality of life without too many medical complications.

Meanwhile, I had my PT evaluation with Lahey. I'll just say up front that I don't like these guys. I wasn't super-happy with them last year except there was one woman there who was my New Best Friend because she could properly crack my back so I dealt with that. This new guy... well, he lectured me twice in the first ten minutes about my posture.

Dear Physical Therapist, You are not my mother. I spent decades hearing about my bad posture from my mother, and I no longer have to put up with it. I have shitty posture because I have spinal problems, which is what I'm here for. Deal with me on a helpful level or get out of my way. They also spent a lot of time giving me blah-blah about my arm problems, which I'm happy to have help with but is not the reason I'm there. Also, treating my preliminary diagnosis as a final diagnosis, and getting huffy about the fact that I'm getting an MRI somewhere else... yeah, the whole thing didn't go well. I've got two appointments with them and if things don't improve I'll go somewhere else for my PT.

So, about that diagnosis. I got a written version of the document I'd already seen with a hand-written annotation from the PA I saw at the start of this saying "significant arthritis in neck". No useful information about what that means, why that's related to the problems I'm having now, or what to do about it. She (the PA) seems to think the neurosurgeon will cover all that with me this week, so we'll see.

I did manage to get an MRI done Friday despite the snow, and I have two CDROMs in my possession. I need to figure out how to get the data into the Lahey system so the neuro and the PT can see it, and I need to have a conversation with the Ortho once he's reviewed it about what he thinks we ought to do.

This care coordination is complicated, and I've got something relatively simple. I can't imagine how people manage who have really serious things, or have things that make it hard for them to do their own care coordination.

Date: 2015-02-09 05:31 pm (UTC)
From: [identity profile] psybelle.livejournal.com
had to snicker - as a lifelong asthmatic who ends up on prednisone or an analog once every couple of years, I sympathize - and oh, yes, I have stories!

Wild mood-swings, occasional random brainfarts (the only time I've ever lost a credit card, put a kettle of water on the stove to boil for something and forgot about it to the extent that I ruined the kettle…), weird food cravings AND electrolyte imbalances, fragile skin and really amazing bruises from nothing at all…

It's some powerful stuff, but I hate the side effects.

(Wishing you good luck in managing the pain!)

Date: 2015-02-09 06:34 pm (UTC)
From: [identity profile] tamidon.livejournal.com
Prednisone turns me into a werewolf, which is the only way I can accurately describe how it affects my mood. I get prescribed it when hit with poison ivy, which the last time I got was starting to close my bronchial passages. It's been a long time since that last poison ivy hit, but I do remember the prednisone affect.
I must say, I got none of that with whatever steroids they injected into my ankle, and that's turned out to be a freakin' miracle, first time in years I have walked without pain. So far it's 6 weeks out, I'm hoping for at least 4 months. Keep in mind it's been these last 6 weeks with this bullshit snow and shoveling and still no pain.
Change PT if these guys arent doing it for you. It's like any therapy, a bad match is a bad match.

Date: 2015-02-09 09:36 pm (UTC)
From: [identity profile] weegoddess.livejournal.com
Wow. That's some heavy stuff, than pain management.

Glad you're making...progress? But very glad that you found some relief for a while. Hoping a good balance is easy to achieve.

Here, have a back-related icon.

Date: 2015-02-09 09:48 pm (UTC)
From: [identity profile] chienne-folle.livejournal.com
One has to be in relatively good health in order to navigate our medical system, which is completely crazy. I'm sorry that you need medical care, but given that you do, I'm glad that you have enough spoons to actually GET that care. I hope you'll find a physical therapist who will treat you well -- as in both respectfully and skillfully -- soon.

Norman gets a lot of physical therapy, and he thinks most physical therapists are jerks. There's a woman he likes at Harvard Vanguard in Somerville -- the ONLY physical therapist he trusts there -- called Nancy Sweat. (Her last name is pronounced as if it were spelled "Sweet.") If the current guy doesn't work out, you could try her.

Date: 2015-02-09 10:10 pm (UTC)
From: [identity profile] sweetmmeblue.livejournal.com
There is someone close to us that I go to and like. Which is where he got the ortho (the one I see). I'm really picky about my providers. I don't suffer quacks.

Date: 2015-02-09 11:21 pm (UTC)
From: [identity profile] chienne-folle.livejournal.com
I don't have enough spoons to search out decent medical care, so I just ... don't get any.

Date: 2015-02-10 04:26 pm (UTC)
From: [identity profile] sariel-t.livejournal.com
Seconded! Prednisone is wonderful but weird.
Best of luck with coordinating care - from a different front, I know how much of a pain in the arse it is/can be.

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