Here is the cliff notes version for those who want a quick run down of what is going on but don’t want to know details or just don’t like reading…
I fractured my back (no exciting story on how, sorry!). Due to this, my vertebrae is not attached or aligned as it should be anymore which is causing a lot of pain and my back is “unstable”. I then started having seizures in early September which may or may not be related to the back issue. I had/have lots of dr appointments and tests and am having surgery on 10/26 to repair my fractures and spine alignment. I’d give the pain and seizures 0/5 ⭐️ if I could. Definitely do not recommend!
And here’s the long version…. I’m not going to apologize, you made your choice which one to read!
Just a little background for anyone wondering - I have several autoimmune diseases that I have dealt with for as long as I can remember and one of them that specifically causes a lot of issues is called Ehlers Danlos Syndrome. It is a genetic mutation that affects the collagen in my body which causes flexibility and unstable joints. This can affect any joint in my body - including the spine which is made up of facet joints connecting each vertebrae.
When I was a kid I had a lot of “party tricks” which were really cool at the time but when I turned 30 I started experiencing many torn joints and also stress fractures (both hips in the past and currently my back). Those party tricks don’t seem so cool anymore but how would I have known?! 😅it’s not totally my fault though, just in general the “wear and tear” on my joints happens earlier than most.
My back has often given me trouble from this instability and I can’t remember a time when I did not have at least some back pain. That’s what the heated seats in the car are for, right?! Alex doesn’t believe me but I know I’m right 😉
Back in May my pain started to increase more and more and by June/July it was drastically decreasing the amount of sleep I was getting. The pain was getting so bad that I would wake up at 1 am, 2 am, 3am, etc and would be up for the day. This went on for months.
I had an appointment with my PCP who sent me for a Lumbar spine MRI and to a spine specialist. I found out that I have bilateral Pars fractures (these are the part of the vertebrae which make up those facet joints I mentioned) which has resulted in my L5 vertebrae sliding forward across my S1. This is called Spondylolisthesis for those interested in medical terms. This has caused a lot of narrowing and compression on my nerves and explains my symptoms of pain, numbness down both legs, and currently drop foot on my left side so I kinda drag that foot along when I do try to walk. Lots of tripping going on these days - It’s quite a sight actually. Skye does a great impression that she’s already shown some people 😑
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| My diagnosis is “Bilateral Spondylolysis with Spondylolisthesis” |
I was referred to some Neurosurgeons by my Spine specialist but anyone that has dealt with medical issues (especially since Covid) knows that this can be a painfully slow process. Pun intended.
Before I even had an opportunity to see the Neurosurgeons for a surgical consult I started to have seizures. This was definitely a first for me and scared Alex and I both a lot. He took me to the hospital where they did some basic tests (brain ct looked good!), blood work, and put me on seizure medication with instructions to not drive and to follow up with my drs and a Neurologist.
The seizures continued every 3 days or so and at this point my pain was increasing. More tests and we still don’t have a concrete cause of the seizures. Two drs have suggested it could be something called Lupus Cerebritis since I also have a diagnosis of SLE Lupus but my lupus is pretty well controlled at the moment so I really don’t think it is that. Usually this happens when it is not well controlled. Alex and I are really hoping that it is related to the intense pain and lack of sleep I have been dealing with because that should be an easier thing to fix.
We won’t know for a while but we’ve got to hang on to that hope because this has been HARD! My seizure med dose was increased a couple of times and I am now on the maximum allowed adult dose so we can not increase anymore but it has been helping! My seizures have been less frequent and less intense. Oddly enough, no matter how “bad” or “not so bad” the seizure is I am totally knocked out and barely remember anything for about 12 hours following.
My first seizure was early morning on September 3rd. I have not coached since September 1st (I wish I’d have known it was my last time - at least for a long time - I probably would’ve made them do more burpees or something! 😂). I had no clue things would take this turn and unfortunately I have been feeling so bad most of the time that I haven’t fully processed it all yet. We are still taking a day by day approach.
On the upside - surgery is scheduled and it’s only 10 days away!! My surgeon feels very confident that he will be able to greatly improve the way I feel once we get past the initial surgical pain. As far as the seizures go, we won’t know for a bit. Either way though I am looking at at least 6 months of no driving. This gets pushed back each time I have one. Now that’s a hard pill to swallow….
If you hear me make jokes about my broken back and how my kid probably “stepped on all of the cracks” on purpose, well, it may seem strange to some but humor is the way I deal with things. It sure beats bitterness. I can’t change it - may as well try to laugh a little when we can. There have been some very very bad moments that humor can’t make better or fix but if I’m having a better day and the opportunity arises, I’m definitely going to crack a joke or two!
We all know which kid is responsible 😂
If you made it through the long version, thanks for reading! If not, I get it. This is mainly for me to just get it all out. It is therapeutic for me to write out my thoughts and I know some people may be curious what’s going on anyway 🙃
I’ll try to keep up with adding quick updates here instead of Facebook. Keyword is quick! They won’t be long like this one. Promise!
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