Category: MRI

Research Mode: Expert

Posted on by Grayson
photo of a lab setup with beakers and test tubes filled with various colored liquids; under this is a white background with green text "Research Mode: Expert" under which is black text "Not Standing Still's Disease" and under that is a line of diamonds in the same green color as the other text
When I was little, doctors couldn’t figure out what was going on with me. We had to find an answer and bring it to them. This seems to be a running theme in my life.
My recent “bladder cramps” (we think?) were investigated. Nothing odd showed up on my transvaginal ultrasound or in test results. *I* had to check back in with my GP (also an OB/GYN) and see if she thought pelvic floor therapy would be a good idea. After several days (and asking me to re-explain symptoms in my records from our last visit), she said yes.
Now, with another neurological test on the horizon, I find myself doing the same thing.
[Book with a dark background and cells/biologic drawings on it; "Pathophysiology: the biologic basis for disease in adults and children" by Kathryn L McCance, Sue E Huether, Valentina L Brashers, and Neal S Rote]
Obviously, having a rare disease is tricky. Knowing more about my familial history of weird undiagnosable neurological stuff makes it extra fun. Naturally, I’m starting to do my own research on some things.
Because, again, running theme.
My latest MRI showed a bulging disc that was noted to be more severe in my records (that I received on Friday) than was listed in my test results. Instead of listing just that there is a bulging disc at L5-S1, it lists the following:
L5-S1: There is a broad-based disc bulge with more prominent far lateral components causing mild-to-moderate left and mild right foraminal narrowing. No canal stenosis.
Now, that makes it sound worse than a simple wear-and-tear or overweight-patient version of a bulging disc, right? I think so.
What is also important to note here is that the bulge is worse on my left side, just like anything else in my body. Based on my pain, I knew this already. However, it is somewhat bilateral (on both sides), which is important to note as well.
This also sounds much more like it could be contributing to my symptoms – and even potentially the “bladder spasm” stuff. Of course, neither my neurologist nor my GP/GYN have addressed the disc… which pisses me off.
In addition, I’ve begun having headaches that start intensely anytime my head goes forward past a certain point. When this has happened before occasionally – mostly after being very physical – I’ve been able to ease them by relying on my chest for this movement as opposed to my head/neck. That’s not the case now, nor is it only when I’ve been active.
It really sucks, especially on top of the other symptoms. That said, it does keep pushing me in the direction of more rare conditions like a CSF leak. To be honest, when my symptoms could be relieved earlier this year with being horizontal, I thought this could be a thing – and this can happen in the spine.
I should know more once I get my medical images and/or after my EMG and nerve conduction test on Wednesday. I’m hoping I can also start a medication for migraines, which should have been done already.
Oy.
I’m not ecstatic about these tests. However, I know that they might help yield some answers. I’m just hoping the range of testing that lies before me won’t also cause a ton of extra pain. I’m not equipped to deal with as much as I’ve been facing as is. Adding more in without adding in any actual painkillers might, well, kill me.
Not if I find the answer first.

 

Latest MRI Results

Posted on by Grayson
a photo of a one lane road in the middle of a body of water; white text at bottom middle "Latest MRI Results" and "Not Standing Still's Disease"
In my last health update, I shared about how I had an MRI coming up on what was last Friday. In reality, it was two MRIs scheduled back to back (HA!) – one of my thoracic spine and one of my lumbar spine.
The MRI team was great. We talked about tacos, guinea pigs, and fun things to do in the area. More than that, they were incredibly caring and very helpful.
I took a Valium before the MRI and it worked much better than the last time. I was incredibly groggy and wound up sleeping for a good amount of the time I was in the machine. To be honest, I don’t even remember how much of the time I was awake.
That was perfect – exactly what I needed since my head got to be in the most narrow, coffin-like part of the machine for nearly the whole time.
T and I went out for tacos at our favorite local place, and then I came home and slept for a few hours, waking up incredibly alert and ready to do things. In the middle of writing my last paper for my masters, I got an email about my test results.
My thoracic spine MRI came back completely fine. This part of the spine, for those unfamiliar, is between the neck and the lower back. My lumbar spine, though, did not.
 
“At L5-S1, mild broad-based disc bulge results in mild to moderate foraminal narrowing on the left.”
Yeah, I had to look that up too, but I knew it wasn’t great. The note said that these were ‘degenerative’ changes, though knowing my body this may not be entirely true. The short story is that I have a bulging disc, causing stenosis that is smooshing some nerves.
Now, the note from the radiologist in my test results says this isn’t causing my symptoms. After doing my own research, I feel like this could be, though. Everything I’ve found discusses how back spasms can be a part of this – something I’ve had since 2012-ish but was told this was due to scoliosis that my physical therapist at the time and I found on my X-rays.
Anyway, the symptoms can include pain (duh), muscle weakness, pain along nerve paths, pins and needles or hot feelings, numbness and tingling in the extremities, and more.
The symptoms that worried my neurologist as I explained them were bowel and bladder incontinence that came up during my last big neurological thing. It’s important to note, though, that having IBS can explain that in conjunction with all this. Think about it – muscle weakness and an already-upsettable GI tract?
My back pain is becoming more prominent. I think part of it is because I know this isn’t something to dismiss as I was told to when it was ‘just’ scoliosis-related pain. Thinking back, the summer of 2012 is the first time I also had some of the neurological symptoms I’ve complained of recently, including issues with temperature regulation.
It could certainly be coincidence, but I don’t know. We shall see. I haven’t heard directly from my neurologist’s office. I suspect I will sometime this week, though. If not, I know that my EMG coming up on the 30th is with him so we can talk more about things then.

 

MRI Fun, Part Deux

Posted on by Grayson

So it took my rheumatologist A WEEK to get back to me with my MRI results… Any test in the health system I use (and now work at, so I know what’s up too) is supposed to be processed and presented to the patient within three days. Not that it ever happens with this doc…

That’s beside the point (kind of at least).

Anyway, I do NOT have avascular necrosis (AVN). Hooray!

I do, though, have a tear in my labrum.

This explains why wearing underwear hurts like a bitttcchhhhh.

She gave me the choice between PT and surgery. Seeing as I work with a couple of sports med docs over here in peds, I opted to ask for the surgical consult and talk it over with one of them… who suggested that surgery is THE way to go… as have the handful of other patients that contacted me yesterday. One reason for that is that there could be outlying issues with my hip that have caused the tear (as is very common with autoimmune arthritis patients) and they can see that when they go in.

My rheumy was not happy with my decision, but it’s also not her body. And, given the fact that they have my diagnosis listed incorrectly in the computer among other issues, I don’t necessarily care as much what she thinks.

This surgery is a lot less frightening than the AVN one for a lot of reasons, but one being that it is really minimally invasive. It’ll probably be a while before I can get in, but I think this is the way to go. My left hip has always been a problem joint for me and I really believe that this can help clear up a lot of those problems. At the very least, it’ll help me eventually get off these narcotics I’ve been taking. I have to say, though, Zohydro is amazing. I can function on them mentally, whereas when I’ve been on the oxy drugs in the past, I just want to sleep and throw up. I’m back to feeling like an intelligent person, and that at least has been very helpful.

I probably would not have gotten Zohydro if it weren’t for a very kind doctor that I saw at urgent care the Sunday after this pain started (Dec 21). He really paid attention to my allergies and wanted to give me something I would have a lower chance of reacting poorly to. He really took the time to go through everything with me, came over to the pharmacy with us, etc. And he was a newer doc! Younger docs tend to be more afraid of prescribing pain pills, so I was glad to see that he wasn’t. Getting them filled at Walgreens was extremely easy as well and that was great because I was in so much pain and so tired. I honestly feel very blessed for how things went down that day.

When my rheumy refilled my Zohydro, though, the pharmacist at Walgreens was a total bitch. She asked questions in a way that didn’t make sense to me, blew off my questions – even interrupting me as I was asking them, and had me stand up at the counter for 15 minutes with my cane while I was visibly in pain. She treated me like a pill seeker, and I remembered why I normally don’t go to Walgreens. However, my insurance doesn’t cover this medication and Walgreens has a discount program, so… I was kind of stuck… though next time, I may not go to the one by our apartment.

Want to learn more about the surgery? Check out Joan’s blog, Life with a Flare, or Kenzie’s blog, Life According to Kenz. They’ve been so helpful!

MRI Fun, Part One

Posted on by Grayson

Wednesday I had my first MRI and my second IV.

I hate IVs, but I have to say Tracy was a pro. Barely hurt and, after a few minutes, I could move my arm as much as I wanted.

Kudos to everyone who told me how freaking loud the MRI machine was because damn.

They didn’t get me lined up right the first time, so they had to pull me back out of the machine and readjust everything, which meant going back into the hole again. The nice thing is that since this was of my hip I went in legs first… so I could at least pretend I wasn’t really all the way in the MRI.

After about half an hour, it was time to pull me back out and administer the contrast. At this point, I was hella warm because I was nervous, cramped, and around all the magnets (duh). I had some rash pop up and they were nervous it was something they needed to be worried about. The nice thing, though, was that they were cool when I told them I just get a lot of rashes due to my disease. I think there was one more ‘are you sure you’re okay?’ question before they sent me once more into the fray.

I know that those machines are small to begin with, but it definitely got me a lot more concerned about losing weight. I’m not a claustrophobic person but yikes.

Here’s the bad guy we’re looking for:

Check out that right side though. Yeowch. That’s a little funky.

And I don’t think this picture made the thought any better. Oy.

That was Wednesday night, and I still haven’t heard anything yet. Honestly, a little frustration is popping up here. It’s been four weeks with this pain coming up Thursday, and I’m a little miffed it’s taking so long to get things going.

At least I got dinos!

Oh well. Bring on the results baby!

An Exciting Week

Posted on by Grayson

This week brings a lot of new exciting things for me.

It’s back on Monday!!!

On Monday, I start my new job in pediatrics! I’m super excited!! Also, Gotham is back.

Theron and I get to go to see the Milwaukee Bucks Tuesday. We got some great seats, and I’m excited to yell out at the guys.

Then Wednesday night, I get to get my first MRI.

I saw my rheumatologist last week and she thinks I may have avascular necrosis (AVN) in my left hip. AVN is often caused by steroid use in those of us with autoimmune arthritis. To be honest, my pain fits in pretty well with what I’ve read described so I’m bummed about that… especially because it could mean more medications, staying away from steroids even more, and any one of a handful of surgeries.

This is not how I wanted to end 2014 and begin 2015.

The nice thing is that I’m working at the med school, so the people I work with will be much more understanding of the issues I’m facing. I’ll also have to do a lot less walking, especially since I’m not working on a hill anymore.

I’m excited to figure out if this is for sure AVN or not, more so I can quit worrying about what else it could be.

That’s how my exciting week is panning out. What interesting or new things are you up to this week?