This is long and full of TMI. Feel free to ignore it. But if you want to hear the story about how I became a miracle….
10 years ago I was in a horrible car wreck. Most of you know
that. It was bad. I was in a coma for a week and amnesia for a month. It is a lot
to tell so I will leave it at this. I am brain damaged. The official way to say
it is I have a short-term memory retention deficit and a long-term memory recall
delay. I come off as a ditz. I am not a ditz, but I AM tad slow. Just give me a
minute and I will catch up, I swear! I am a miracle. To jump ahead a tad, my
neurosurgeon made that very clear. The way he put it is this – “You are a conundrum.
You SHOULD have been rolled into my office by an attendant who answers all your
questions for you while wiping the drool off your face.” So, yea…miracle.
I didn’t have insurance at the time of the wreck. I was in
between jobs (I was SUPPOSED to start the new job the Monday after the wreck). So,
once I woke from my coma, I was booted out the hospital and put in my mom’s
care. She is a saint and took care of me the best she could but truth is, I
SHOULD have been at a facility being tended by professionals. But hey, we live
in the good ol’ US of A so…I was at my mom’s house. We were all told this is
forever. Watch 50 First Dates for a cute, romantized comedy of the basic gist
of what I was like. Then one day, a month later, I started retaining memory and
decided it was time to go back home. There was no convincing me otherwise. Again,
if I was in a proper traumatic brain injury rehab facility this probably wouldn’t
have occurred but there was no convincing me I wasn’t alright.
To keep this as short as I can manage, I will just say, the
next couple years were tough. I didn’t know how damaged I was, and I had no
help. I did get insurance but it was crap insurance and again, I was BRAIN DAMAGED
so I just didn’t comprehend how much had changed but truth be told, I have a
feeling that if I had proper medical after-care, I wouldn’t be have progressed as
far as I had. I HAD to work. I was a single mom. I had bills and responsibilities
and it just wasn’t an option so I did what I had to do as best as I could.
Time goes by. My brain injury is absolutely and always will
be a BIG part of who I am now. But it is no longer a MEDICAL concern. I finally
get a job with decent health care and start seeking care for a few things that
have been off with me. They don’t seem connected but boy howdie (yup I said it)
are they.
The first thing to take over my world, medically was these
flares I stared having. Every joint in my body would hurt. Every injury I have
ever had would inflame. I was exhausted and depressed. But now I have good insurance,
so I seek help. SOMETHING is wrong. I have some sort of auto immune disorder of
some kind. But doctor after doctor after doctor can’t figure it out and truth
be told, didn’t try very hard do so. After the very basic labs and x-rays they
would all come to the same BS conclusion. Fibromyalgia. Don’t get me wrong. I
am not saying Fibro isn’t real. I am not even saying I don’t have it. Maybe I
do. But this was NOT FIBRO. Every time a doctor would lazily decide that was
the problem, I would find a new one. In total, I saw 7 different doctors (RA
drs, a few ortho doctors and an internal medicine dr or 2) for the joint pain.
While I am going through these mystery flares, other things are happening. I start tracking it all and seeking answers and I was VERY depressed by the answers. Basically, there wasn't any beyond MAYBE I am just not aging well and I was starting to believe that.
I was peeing ALL the time. Especially
at night. Waking 8-10 times a night to pee. But hey, I have 4 kids, of course I
have to pee all the time. My Urologist diagnosed me with “Overactive Bladder”
and put me on a pill. It SORTA helped. 8-10 times a night turned to 6-8 times.
What a relief. Oy.
My kidneys begin acting up. BUT I have a history of kidney stones so they
decide it is just par the course. I am doomed for kidney failure and apparently
have some sort of salt wasting disease. Just facts. Say my Nephrologist.
My Nephrologist found the uncontrolled hypertension. It was
so bad that I would be sitting in stroke levels of hypertension for weeks but
then it would drop to hypotension. So I could only be on the lowest beta blocker
to hopefully not stroke out but can’t be on higher dose because the occasional hypotension.
My stomach starts acting up. GERD, they say. That is what I
get for all the 800mg ibuprofen the Army basically make part of the uniform.
I am getting migraines a lot. And now I have a Neurologist to boot. I should have always had one. I AM brain injured after all. Anyway…
Damn, I am aging badly. I am in my 40’s. If this is 40’s I don’t want to see 60/70/80.
I am DEPRESSED. I am suicidal. Straight up fantasizing about being done with
this shit FOREVER.
HERE is the kicker. Aside from ALL of those issues, I HAVE
been having this occasional left shoulder pain. But only at night when I sleep
on that side, and it isn’t all the time so I don’t even see a doctor about it.
I DID mention it to the slew of drs I saw about the joint pain. My arms go numb
if I sleep on my back too so I DID mention it, but it is the least of my
concerns. It was actually the BIGGEST concern. And no, it was not a heart
attack.
Last December, I woke up one morning and my arms didn’t
work. I don’t mean they were asleep or numb I mean they DID NOT WORK. My brain
says lift arm and my arm just lays there. This went on for about 10 minutes of
straight terror. Then I get some feeling back. Slowly, I have full use of my
arms again and I start calling doctors. Shoot, now that I think about it the fact,
I got a same day appointment with her is also a miracle. Dr Mukai. She saved my
life. I owe her everything.
Dr Mukai is an Orthopedic doctor. She comes in the room and goes over my patient
history. FYI this is the SAME history I have given all the doctors I have seen.
They see traumatic brain injury on my history. The don’t have the records to back
it up though (another story for another day) so I guess they must assume it
wasn’t that bad? I mean, I tell them car wreck, coma, amnesia but I guess they
assume I am exaggerating? I don’t know. I just know they all just skim over
this detail and never consider it as a cause. Dr Mukai didn’t though. She sees
the accident and puts one finger on my neck and has all the answers. Didn’t
know it was all the answer at the time, but guys DR MUKAI IS THE HERO.
Dr Mukai puts one finger on my neck and slides down. “Yup”
she says “You DEFINITELY have whiplash. Let’s get you an x-ray.” So, I get a
quick x-ray of my C-Spine and it is all there My neck is turned backward. You
can see herniated discs and bone spurs to boot. Dr Mukai orders an MRI to see how
bad everything is but in the meantime, hooks me up with a steroid epidural to
ease the inflammation and keep the paralysis at bay until we see what my
options were. THIS was a mistake by the way. One that almost killed me. I still
think she is a fucking hero who saved my life though. Let me continue.
Waiting my MRI more stuff starts going wrong. I am suddenly
EXTREMEMLY fatigued. I am falling asleep at my desk. I am falling asleep everywhere.
I am in bed by 6. Every task is so very hard. Everything is getting worse and
finally I am not the only one scared. Dr runs labs and apparently, I no longer
have any pituitary hormones. NOW I have a Endocrinologist too! The running
thought on this new development is Pituitary tumor. Brought on by my brain
injury (it can happen). Funny, once Dr Mukai acknowledged my car accident,
every doctor after starts to too. Mostly because SHE built my team from this point
on. (Side note, my PCP is 100% referred to my by Dr Mukai and that is the only
reason I trust her)
My MRI comes back. It is not good. It is VERY bad actually. There is the severe untreated whiplash (How the FUCK was this not seen when I was in the hospital? My theory is no insurance so why bother with more than life saving care) Untreated for 9 years and the damage is extensive. 5 out of 7 of my C-Spine discs are herniated. The top few are not so urgent. Just need to keep an eye on them but C5-7? Fucked. Not only herniated but bone spurs. Not any ol bone spurs either. Nope. There are several but the big one is the one jabbing straight into my spinal cord. Hence the temporary paralysis. I say temporary but Dr Mukai gives me roughly 6 months before it is permanent. She is not longer the doctor for me. I need surgery.
So, I meet one of her team. An Ortho surgeon. I liked him. He was SO going to do my surgery. I felt confident in his ability because Dr Mukai sent me to him and she was the first doctor to actually DOCTOR me. So when I went for a 2nd opinion it wasn’t really my choice. Ronnie fussed at me. This is not just your spine, he says, this is your brain stem, this is your if they screw up you are paralyzed from the neck down kind of serious. So, research a 2nd opinion. Things are about to get crazy, y’all. Hang in there!
The other choice for surgery is a Neurosurgeon. Step 1,
research Neurosurgeons in the area. Ok. I find one that looks interesting. He
has 5 star reviews online across the board amazing work AND he is ALSO a
Traumatic Brain Injury Specialist. Ok. This sounds like the right guy to see.
Dr Lauryssen. Guys. This is CRAZY.
I go see Dr Lauryssen. I am giving him my patient history.
Car wreck, TBI, blah blah blah and he stops me…”Wait, this accident was what
8-9 year ago?” he asks. I answer yes. He stops me, turns around and gets on his
computer. No explanation. Just a finger in the air (for me to hold on) and then
he pulls up a Cat Scan of a brain. MY BRAIN. “This is you!” he says. Uhm, what?
HOW do you have that? I don’t have that…I don’t have ANY records from my
accident. (I have been trying to get my records this entire time to no avail.
No body could agree what hospital I was at!) He says, “You were at Breckenridge.
I consulted on your brain injury!” “What?” I reply “Wow. How do you REMEMBER that?”
I mean, car accidents are a dime a dozen. He says “More importantly, HOW are
you sitting here speaking to me like a full functioning human? I remember this
because it was that bad. You are a conundrum. You should have been rolled in
here with an attendant wiping drool off your face. YOU, my dear, are a miracle
if I ever saw one.”
Then we go on to discuss my newfound insane fatigue and
possibly pituitary tumor. (Another reason I chose him was the potential of
needing brain surgery to boot). He laughed. “You don’t have a pituitary tumor!
I PROMISE. I don’t even have to look at a scan! Someone with your level of TBI should
NEVER EVER get steroid epidural. This is common knowledge.” What? Common knowledge?
I beg to differ! He said, with a shrug “Well it is common knowledge in Neuro.
Good way to shut off your hormones right there. Don’t ever let anyone do that
again.” Give it a month and you will be fine…and I was. At least hormone/ narcolepsy
wise.
Guys, this sound dramatic but I decided then and there that not only was this absolutely the surgeon for the job but also that if I die on the table, it is just meant to me. I was at peace. I 100% felt that regardless of the outcome, this is meant to be. I went into surgery without the slightest apprehension. Way too much connection for this to not just be my path.
I felt a little bothered that the surgery was taking precedence when I have all these other medical mysteries to deal with. I worried me putting them on the back burner might be a mistake but what choice do I have? I am on a time limit to paralysis. That at my hands were beginning to go numb and I was losing my ability to hold things. I get the surgery. He fused and caged C-5-7. My neck looks like it has bike chain on it. I AM METAL BITCHES! Lol
That was 7 months ago. During those 1st few weeks when I was high on Oxi and muscle relaxers, I noticed I wasn’t peeing as much as I was before but credited it to all the Oxi. I also noticed my blood pressure seems to be stabilizing. Again, I assume it must be the Rx. I do bring it up at my f/u with Dr Lauryssen. He says, “Yea, that can happen”. But I didn’t ask why. I didn’t really think much of it. It would all come back, I am sure, once I am weaned off all the Rx. Next f/u and I mention how very much better I am feeling. My GERD isn’t acting up, my kidneys aren’t hurting all the time, I am STILL not peeing all the time and every time I check my bp it is GOOD to hypo and nowhere near hyper. My migraines have stopped… Once again, Dr Lauryssen replies “Yea, that can happen”. This time I reply “But HOW?”. He replies with “Oh! I didn’t tell you? Your Vagus nerve was trapped in all that mess” (signaling to my neck).
WHAT!? My Vagus nerve? What is that? He says “Oh just the more important nerve
in your body”. So I googled and find he is right. EVERY SINGLE ONE OF MY NEW (post
car wreck)MEDICAL PROBLEMS ARE/CAN ALL BE AFFECTED BY VEGAN NERVE ENTRAPMENTS.
Why was this not figured out by any of the other doctors? I
ask. He says there is no easy test for the Vagus nerve. He says he thought that
was the answer when I told him the list of things going on with me but wouldn’t
know until he cut me open. I asked him why nobody else put this together. I
mean, if these things are all classic Vagus Nerve issues why did not one dr (I
saw roughly 20 drs in the past 5 years) even consider this. I mean, an easy Google
search shows the location of where the Vegas nerve exits your head and goes
right down both sides of your neck and I was in a car wreck with a massive head
trauma. Why did no dr. connect the dots? He said he was so sorry about how I
got to him but so glad I found him. I agree.
He left me with this. “Make sure to tell EVERY doctor you
see that your traumatic brain injury is in the SEVERE category. That your brain
doesn’t play by the rules. You are a miracle and a conundrum. When someone
walks in and says they have a history of TBI a doctor thinks concussion. They definitely
don’t look at you (as he waves his hand up and down over my able body) and think
severe tbi.”
If you take one thing from this long ass story take this advice. There ARE
wonderful doctors out there, but they are few and hard to find. NEVER just
trust your doctor. EVER. Research. Dr Google. NEVER accept a diagnosis that
doesn’t feel right. If I had accepted the Fibro (over and over) diagnosis, I
would be paralyzed right now. You MUST
be your loudest advocate.
