Another Month, Another Setback

So, after recovering from a perforated ulcer in the hospital for the longest 6 days of my life, not even a month later I find my balance suddenly ripped out from under me where my body from the waist up feels like it’s being pulled to the floor like a magnet. Going 10 feet to the bathroom I end up hitting my head twice into the glass shower door and the drywall in front of the toilet.

Needless to say I was diagnosed with a concussion and had another MRI on my brain (for now). Which was normal and the congenital defect on a vein in my left frontal lobe is stable from previous MRIs – all good news.

Except the recovery time from this concussion has been hell. A month in and any phone time has been very limited, balance has been circus show in itself, I don’t like driving far, I’ve been sleeping 18-22 hours a day and guzzling water like it’s going out of style.

Now I’m facing another Neurologist visit, the scoping of my stomach and the beginning of my lower intestines (where my ulcer is located), oh and two teenagers starting high school.

So sorry folks for the long delay as it’s been very hard to look at electronics and I’ve been auditioning for Disney’s live version of Sleeping Middle Age Beauty. But on the bright side I’ve finally got on Twitter in hopes to spread Myelopathy awareness. Find me @myelopathystory

That’s all for now!

Walking On Broken Glass

So, after a failed ablation surgery in April in an attempt to better manage my pain, it was very deflating. If that wasn’t bad enough, I had started feeling pain right below my rib cage for the better part of a week. By Wednesday, when Percocet and Soma didn’t knock me out I knew it was not to be ignored. I hate being right….

Wednesday afternoon I go to the ER with my Dad. One CT scan later changed the ball game. Ruptured Stomach Ulcer. I was being admitted and would most likely face surgery in the morning. So I spent Wednesday night with nothing but ice chips, an IV that would occasionally have antibiotics attached every 6 hours and morphine injections every 2.

Thursday morning the surgeon comes in and says the rupture is small and because it’s in an unusual place he’s hoping it will seal itself eliminating the need for surgery. He has X-rays ordered to see if there are air bubbles in my abdominal cavity which would indicate perforation is still oozing stomach acid into my abdominal cavity and onto the surfaces of other organs. X-rays show all is well so far. Ok, that’s good news, but no easy path. Another 24 hours of the constant change of IV bags and various medications with nothing but ice chips. And seeing that at this point my last snack was noon on Wednesday I was starving.

Friday – repeat this process with finally being blessed with a clear liquid diet – and as picky as I am meant that came down to Italian Ice, Jello, water and iced tea.

Saturday repeat. Except now upgraded to a full liquid diet which included the blandest oatmeal – blended down to baby food consistency – which was plain gross even to taste. Late Saturday night is met with the clear diet finally hitting the exit with a splash which sends the nurses into warning frenzy which will require further testing.

So here we are. Food has been upgraded to a regular menu and I enjoyed my first bagel this morning. Followed by some sleep that is very hard to get in any hospital. I walk the once bustling hallways to room after room empty. It’s Day 5 and I’ve had 3 different neighbors in the room next to me in 5 days and yet I’m still here…stuck – with no mention of a discharge date, and even when it does come, it will surely be followed by more daily prescriptions to add to my daily ritual. It’s depressing when even the dogs aren’t looking for you anymore.

So in a nutshell, my health continues to walk on broken glass.

Medical Problem Child

So the last couple of weeks my sleep has been completely out of whack and the pain medication has lost most of its effectiveness. The spascity in my legs and arms has gotten worse and I’ve had to go back on blood pressure medication as my resting heart rate and blood pressure skyrocketed back up when I attempted to get off one of the 16 prescriptions I have.

My only thought since I’m no longer having full blown panic attacks which caused tachycardia which is the original reason I was placed on that medication is that it’s my body’s physical response to the constant severe pain that makes some days impossible to get out of bed except to use the bathroom. But I will tell you I expected to have acquired minor cardiovascular issues with Myelopathy. Oh the fun surprises it brings.

So it’s definitely time to go back to the doctor and get medications changed around as the unfortunate part of a lot of my medications is your body gets used to the drug and dosage and needs regular tweaking whether upping the dosage or changing the medication out completely for another. I look at my daily pill box and it’s quite sad that I have to take 19 pills a day – and that doesn’t count the pain medication or muscle relaxers that are needed on a daily basis.

But on a positive note I got out to attend a baby shower and see my friends that I haven’t seen since a wedding like 16 months ago – yeah that’s how much I get out. But the couple of hours seeing everyone and socializing was worth the excruciating pain that came on just before we left. And it was fun to put some makeup on and look quasi normal on the outside aside from my trusty cane, even if my insides are falling apart.

Hopefully I will get in to my doctor today and get the changes I need made and maybe another round of physical therapy. Fingers crossed. In the meantime I’ll have my trusty 80 lb furry companion who is the biggest cuddlebug and gives me a sense of peace and calm in my world of daily medical chaos.

Another Day In Paradise

After a solid week and half of my traps and my neck muscles feeling so tight I finally got to see my spinal pain intervention doctor today for some badly needed injections and to have a nice little chat about his little stunt that I did not appreciate.

While I’m very assertive with my medical team (as you have to be your own advocate no matter how great your medical team is)! We came up with another idea that may avoid going back under for facet injections that may or may not work. So first doctor visit was a pleasant one and I walked out of the office finally looking forward to a good nap as I haven’t slept even remotely decently for just about 2 weeks. So I donned my pizza and hotdog flannel PJs and finally got a decent nap with the help from my normal pain meds and a fresh Butrans patch.

So I woke up, changed back into my wrinkled T-shirt and jeans from this morning (Starting a new fashion trend). Got in the truck and looked at my nearly empty gas tank and decided it would be best to fill it up on my way home before the massive snow storm starts. So I drove the mile and arrived at the hospitals physicians building were people are parking vultures and I even saw one lady that was ignorant or had a blatant disregard for disabled peoples need for larger spaces and parked in the yellow stripes – which just irritated me.

So I finally made it to the neurologist office 15 minutes early and sat in the same old chairs that are the worst ever waiting for my neurologists one woman show, Stephanie who never ceases to amaze me with her ability to be the nurse, receptionist, and the direct the flood of pharmaceutical reps with a sass that reminded me a bit of me. So usually the neurologist is the fastest doctor visit ever. Today was quite different. My appointment was for 1:30 and didn’t get called back until 2:15. Which I didn’t mind as I got my French lesson done for the day (On a 31 day streak and 57% fluency… (Je suis mange pour connaissance!) and eaves dropped on high volume cell phone conversations, when I finally got called back. Stephanie mentioned he has a med student with him and she was just going to grab him as I tend to be a magnet for med students being the very atypical Myelopathy case and I was appreciative of her running interference for the med students so they’d miss this unicorn for once. (Don’t worry fellas… I’m back on a regular basis).

Finally I got my walking papers with an order for a Doppler exam on my calves which the tone from the cord misfires makes the muscles feel like they are going to snap by walking too much, just to rule out arterial blockages. I can’t knock the tests, because between my physical therapist having a gut feeling and my doctor listening to that gut feeling, Miss Daisy, my sassy physical therapy assistant back in 2015 saved my life.

So next week is yet again full of more medical and doctor appointments and more fun. But for now, I’ll hunker down during this snow monster that will no doubt crank the pain notch up a few.

I’m living in a medical soap opera!

So… last month my spinal pain intervention doctor throws me into the MRI which at this point I want a buy 9 get the 10th free program instituted. Says ok go see the Neurosurgeon (again) and have him clear you for facet injections and he would just set the appointment up in their Surgical Center after he got the note to save me an office visit. Ok sounds like a plan because at this point I’m tired of the back of my neck feeling like I got hit with a baseball bat. Sounds great right?

So one look at the MRI and I’ll admit it looked a bit off but nothing alarming like any new herniations or compressions. But it did look to me like the 2 of the spacers has moved toward the spinal canal. And while I’m trying to wrap my head around this because those spacers were filled with bone material to grow bone where the removed discs were. Then I saw the abnormal signal all throughout the fusion length from C4-C7 and not just where the bulk of the damage is at C6 which has never moved or resolved (hence permanent damage) so I shrug that one off as a shadow.

I go into the neurosurgeon with the concerns of what looks like the spacers have moved although my logical side can’t seem to process it. Well turns out the spacers haven’t moved it’s bone spurs growing toward the cord off the bones they grew to stabilize my neck because insurance doesn’t cover artificial discs. (Awesome! Santa had a late gift for me and I wish it was coal) and that shadow really isn’t a shadow it’s an abnormal cord signal throughout the entire length of the fusion. So he suggests the possibility of an laminectomy to give the cord some more room even though it’s not compressed but it’s definitely in the watch category. So that was an easy declination of that surgery with the mindset of let’s not do anything that doesn’t have to be done, especially since it would mean another 4 hour surgery and an even harder recovery – yeah not jumping on that bandwagon. Knowing full well it will be nothing short of a miracle if he never has to go back in there for adjacent discs that have to bare the load and in time will likely fail. So he clears me for facet injections. Super! So I wait for the nurse to call me with the scheduling.

So my phone rings…. while I’m in the waiting room just about to go into my counseling session. It’s not my doctors normal nurse or any nurse I knew at that facility telling me to call this doctor for spinal abalation. HOLD THE PHONE – I did not agree to burn my nerves off without trying to numb them first to make sure they are the problem. CART MEET HORSE. The nurse is essentially useless as far as why he is sending me over to another doctor with a phone number that I googled and found was not associated with Rush – no web site no ratings no nothing. Sure let me go ahead and let some person I can not research put me under, jabbed needles into my neck and numb the joints. Sure, and while I’m at it can I make a request for the doctor to be blind – because that would complete the all inclusive experience.

So, because I was already in the waiting room I didn’t have time to argue with her and I was scheduled to see my PCP in the next coming days so I tell her the story and she is bewildered and sees the note from my neurosurgeon who cleared me for facet injections. This is where I strongly recommend having all your doctors affliction to be the same hospital as my spinal pain intervention specialist is well known to my PCP, Neurologist and Neurosurgeon. So she suggested calling back and finding out what the hell is going on.

Well I have a better plan. He didn’t inject my trapezoid muscles so they are flaring and screaming so I will be having a very long, stern discussion with my specialist as I find that conduct very unprofessional and I want answers from the horses mouth and I don’t have the tolerance of nurses who are unfamiliar with my case to not have answers I need especially when they tell me to go see Dr. Jekyll and get my nerves blown away when I was adamant with the physician to not put the cart before the horse.

So other than being in agony from pain and sometimes bedridden for days I’m counting my marbles because I’m convinced I’m missing more than a few.

Then for the cherry on top… my Tempur Pedic cervical pillow decided after 3 years my head was too heavy and it had memorized my neck alright – except it would no longer support it. Given it supported my neck for 3 years at the cost of 100 bucks… I can’t really complain but damn the timing sucks.

But hey, I get to go see my Neurologist and my spinal pain intervention doctors both on Wednesday – Double the fun! Now only if I could dull the pain enough to fall asleep and it actually be rejuvenating. Fingers crossed.

New Year – New MRI

First a little back story…..

So back in May I started to notice an increase in my pain on a regular basis and other subtle changes that raised a flag for me. So my PCP ordered an MRI – which the insurance company denied saying it didn’t meet the criteria. So my neurologist had better luck and finally in August I had the MRI. C3/C4 looked herniated but there were other degenerative changes in my ACDF in C4-C7. So because there wasn’t any new compression, while my doctors urged me to see my Neurosurgeon, I didn’t want to waste his time.

So come October, my pain levels were on the high side of the scale and dosages of my medications were increased to give me some relief. Again, I was asked by my doctors to visit the neurosurgeon and this time I complied with their request, even though I told them giving him an MRI that was 3 months old before the pain doubled down and new and worrisome symptoms started to appear. After that visit he suggested some facet injections in my neck to help with the pain and would send a note over to my spinal pain intervention doctor.

So I showed up for my appointment with my spinal pain specialist who after examining me and hearing my list of new and worsening symptoms immediately scheduled me for an MRI 2 hours later. My medical team is very cautious with me because the Myelopathy left permanent damage in the form of a Myelomalacia at C6, which already left me compromised so it makes it difficult to determine what’s old vs what’s new. Based on whatever results came back if there was cord compression I would go back to my neurosurgeon as I would require another surgery or if there wasn’t any compression he would schedule me for an outpatient surgery for the facet injections at their facility.

So I had my 5th or 6th MRI since my Myelopathy was discovered and since I had to pickup my son to drop him off with his father, I carried that CD in my purse itching to get home to see what’s changed.

Needless to say, I did not like what I saw. It actually left perplexed. It almost looked like areas of my fusion where the discs were replaced with spacers filled with bone material to grow bits of bone to connect the levels were starting to invade the spinal cord sac. And if that wasn’t enough to perplex me it looked like I was having additional cord signal abnormalities which is a huge red flag, but I’m crossing my fingers it’s a fluke from the scan.

So either way this goes a surgery will follow for the new year. Either a small outpatient surgery to inject a nerve block into my facet joints in the back of my neck to provide pain relief up to 3 months or it’s back off to the neurosurgeon and the land of Oz where I don’t dare speculate what the grand wizard will want to do.

Until then….

Myelopathy – A Parody of Charlie & The Chocolate Factory

Ronald Dahl had it right. His timeless story of Charlie & The Chocolate Factory really could parody any life situation. For example:

I imagine myself as the humble hardworking Charlie who thought that golden ticket was a chance to get back to better world but gets stuck inside the madhouse that belongs to Myelopathy- Willy Wonka.

Where Augustus Gloop could represent the spinal cord compression as he is squeezed through the tube.

Where Veruca Salt’s constant stomping around is a myoclonic jerk. Because if the jerk is coming – it’s arriving now just on Veruca’s whim.

Where Violet Beaugard’s gum chewing equate to my every trigger point that throbs over and over again no matter how hard long it’s been there, it may get tucked away behind her ear for a little bit each day but don’t worry – those throbbing aches and pains of trigger points shall return.

Where Mike TVs obsession to TV and is oblivious to anything else is that thought in my head that is always closing watching what else is going to pop up.

The chocolate river that is ever lasting flow of pain where even a fizzy lifting drink can’t take the pain away for too long.

The mastermind himself, Willy Wonka who is always on the go, trapped inside his madhouse, that is the accompanying fatigue that goes hand in hand with his chocolate river.

Denial

Well I got my first denial letter today from social security and for the first time I think I would wish this hell on my caseworker even just for a day or two so she would get it. My daily life is hard to truly imagine or empathize with unless you see it. The part that really aggravated me was the part in the letter that I can do lightweight work like answer a phone.

Lady – the only calls I will take 100% of the time is from my child who lives 75 minutes away from me and that’s only when he calls me and I’m awake. Even my immediate family will tell you calling me is a crap shoot – and it’s not that I want to be anti social, but when you are in severe pain and so physically weak – you aren’t even in the same country of the mood to shoot the breeze.

Yeah except half the time I forget what I’m going to say because I got distracted by pain or fatigue that is never quenched by a nap because a full nights sleep is nothing but a distant memory – maybe extreme muscle weakness is a better term for it.

Believe me when I tell you that nobody in many others like me would love nothing better to erase this part of our lives and go back to work, raise our children, enjoy hobbies, take vacations and have social lives.

Anyone who knew me prior to this would tell you I was a very active person. I loved my accidental career, I loved spending time with my family and enjoyed many hobbies.

When it’s to the point that I can only sew 3 scraps of fabric on a paper pieced 4” quilt block which takes 15 minutes – and I can’t do it without sweat rolling down my back – that’s a problem. When I can no longer fold a basket of clothes, cook even a simple meal, or even muster enough strength to stand in the shower – that’s a problem.

That’s the problem with the government – the people who genuinely need assistance need to fight tooth and nail for it – all the while just making their condition worse and then there are those people who abuse the system which is just despicable.

I swear by the time this whole debacle is over it will be a miracle if I don’t end up on the OR table again or in a walker or a wheelchair before it’s over.

Myelomalacia

So after my wonderful trip to the Emerald City, I was finally granted the MRI from the Insurance companies.

For the first time they actually had to redo a set of images as the myoclonus even in its tamest tends to give me trembles. While I wasn’t expecting the worst, I knew it was the best. Sure enough C3/C4 finally went from bulge a year ago to blown. Something I expected… just not this soon. What was worse is the damage got its label as a myelomalacia at C6 – and by all accounts it not good – it’s essentially a piece of cord that’s essentially short circuiting constantly on hyper drive.

This explains my extreme fatigue and pain I wouldn’t wish on my worst enemy (not that I’d have one anyways, just not my cup of tea), the myoclonus jerks and trembling hands that reminds me of my ex husbands late great aunts bout with Parkinson’s, my bladder issues, all of my clumsiness and inability to walk unassisted by a cane to keep the stability and prevent as many falls as I can.

Although the wizard remains optimistic as it hasn’t spread, story is not progressive as of yet, and hopefully it will remain that way, as it’s kept in the back of my head that myelomalcias can ascend upwards, so in essence once it hits C3/C4 it will paralyze my diaphragm and I will be unable to breathe on my own. While no new compressions, c3/c4 herniation is touching the outside sac that the spinal cord resides in, as well in part of my fusion.

So essentially squeaking by the neurosurgeons table for now. Both the neurologist and the spinal pain management doctor recommended to go see the neurosurgeon, which I’m really not inclined to do until we get closer to that, just yet anyway. If there isn’t compression he won’t want to operate and I’m not going to waste that talented mans time who is well known in the neurosurgeon community here, in Chicagoland.

But it would be wrong to admit that the fact C3/C4 has finally blown and is still quite possible to compress the spinal cord is not exactly giving me the warm fuzzy feeling. I keep thinking stable is good. I can live with a stable myelomalcia, and I can live with additional fusions if and when the time comes.

Until that day I will continue to go to my various physical therapy, my counseling to keep my head on straight, along with my meditation that I’ve been slacking on, sticking to a strict medication schedule (Currently managing 11 prescriptions as of today) and while I’m sure I will fall short of all my New Years goals due to set back after set back, I’m still hoping to finish a quilt, a craft that I had just started to getting into before the house landed in Oz.

That is my hope. And hope is all I have that can’t be taken away, even though its simply not possible to have some days that it feels horribly hopeless being trapped in a body that you no longer have full control of, but I will continue to wrestle those days as they come along.

I found this on YouTube and if you’re interested on learning more, take a peek at this quick video.

Feel My Pain – Myelomalacia

We’re Off To See The Wizard – The Wonderful Wizard of Oz

So unfortunately this Dorothy with her Ruby Red cane is going to see the wizard (aka the Neurologist) tomorrow as I've noticed some changes in my condition since my last bathroom spill in the bathroom which was over 2 months ago.

To be fair, Glenda (My Primary Doctor), wanted me to get another MRI since it had been 10 months since my last one. And wouldn't you know it, my insurance company aka Flying Monkeys, said I didn't qualify and Glenda told me to go see the Wizard because he would have more pull with those annoying creatures.

And I put it off as long as I didn't feel any worse and thought it was proactive but I would still approach it with the wizard at my next appointment which was only a couple more weeks away from now.

But then that green wench cackled at me and sent numbness down my right arm where I couldn't feel my fingers at all – not a good sign even in the smallest of realms. Combined that with subtle changes of existing symptoms finally made me do the right thing and follow the yellow brick road to the Emerald City where all my doctors live.

As I poured over all my latest imaging for clues, using meditation to keep the anxiety to a minimal amount – as stress mixed with what equates to a major power line with a short in it does me no favors and takes no prisoners even on good days.

Because of my case being unusual for the diagnosis because of my age, no trauma, and not a lot of symptoms that shot up red flags for
Myelopathy, it laid undiscovered most likely for years. Which unfortunately that is what myelopathy is good at – masking its identity because the symptoms can be so subtle that the root cause isn't found for a while so most myelopathy patients have permanent damage, the only question that remains is how bad.

For example, you wake up one morning like you slept on your neck the wrong way – and after it doesn't go away your doctor orders X-rays that show arthritis and bone spurs. Is your doctor going to think you have a spinal cord injury based on some
neck pain and imaging shows arthritis? Probably not. That's why it's rarely found immediately because it's so subtle, and usually by the time it rears its ugly head – guess what … you will most likely have some degree of permanent damage.

The spinal cord is an amazing tissue/organ. It starts at your brain stem and is about 1/2" and gradually gets as thinner as less and less information "signals" need to get passed the further down your body. It is a your main electric highway of signals that branch off of cord from nerves that give your body every sensation you feel – from the sand under your feet, to a bulging bladder seeking a restroom while you're doing the PP Dance, to every ache and pain you feel.

That's a lot of information for a pipe only 1/2" in diameter – and that's just in your neck. It actually splits off into branches at the end in the beginning of your lumber region. Which makes it a lot harder to get cord compression in your lower back. It's actually incredibly awesome the way we were built as humans when you look at the anatomy of the spinal cord and how it branches off to every part of your body.

Today I'm just grateful that I'm here and can still walk as my cord was essentially kinked or "buckled" in one space and flattened in 2 others – and with the amount of data flowing through this amazing conduit I choose to be thankful that I can still feel – even if it's only pain.