Mobility Miss’ journey through diagnosis and treatment, June 23, 2016 Gratiana Lovelace (Post #927)

It has been a hard ten days–really five months—and I mean that.  My right back, hip, and leg pain that I have been experiencing since falling in February (outside at the bottom of our deck stairs when I hit a slushy patch), then falling again in March (inside via a slippery dryer cloth on the wood floor), degenerated the morning of Monday, June 13^th while attending a campus meeting into almost an inability to move/walk/stand without shooting pains.

It was so bad, I don’t know how I drove myself home from campus—let alone, how I drove myself to campus in the first place—since I couldn’t brake with my right foot/leg without it sending shooting pains to my back.  So I was trying to brake with my left foot—very jerkily.

What was going on?  I could no longer be stoic and accept that I just had to do physical therapy and everything would right itself eventually.  And pushing myself with work at the office during the week—including meetings elsewhere on campus, and overtime on evenings and some Saturdays—meant that I pretty much collapsed at home on weekends, nursing the pain with my trusty hotpad, turning it off and on every five minutes.  If this pain and leg weakness was merely muscular, it would have worked itself out by now with the physical therapy.  And I love my physical therapists, but my condition was beyond their scope.

Gratefully,  I was able to make an emergency appointment with my orthopedic surgeon’s office that same Monday June 13th—seeing the Physicians Asst. (PA), since my orthopedic surgeon (yes, I have one) was on vacation.  Since I had never met this PA, I wasn’t sure how he would respond to me.  In my experience, new to me medical personnel who examine me sometimes latch onto a symptom that is small and easily treatable, but not helping the overall big picture pain.

Thus I was pleasantly surprised when my orthopedic surgeon’s PA looked at my medical chart, listened to what I was telling him about my medical history with this particular hip/back/leg pain and weakness issue, and then he ordered what probably should have been ordered months ago—an MRI of my lower back and hips.  Even my new rheumatologist in May suggested to me that my orthopedic surgeon’s office should consider scheduling me for an MRI for me.  So I was scheduled for an MRI for Thursday, June 16^th of my hips and lower back—where my pain seemed to emanate from.

And the PA prescribed an aggressive six day dose of steroids called Medrol (not an endorsement on my part, but it may have helped me a smidge, which means a lot to me) to reduce inflammation that he suspected was part of the problem.  So I was on my way to maybe better health and perhaps finding a diagnosis for the pain and leg weakness—to replace the guesswork that had gone on before.

What is an MRI?  Well, unlike xrays which look at the dense materials of the body’s skeletal framework—such as cartilage and bones for breakages, bone spurs, and other anomalies–MRI‘s examine the surrounding soft tissues of the body (spine image right), or the liquid/moist parts as the PA amusingly put it.  So in I went, to an open MRI—wherein, I was not sliding through a donut, but slide between two sandwich layers of powerful magnets.  It is not for the claustrophobic—nor for anyone who abhors constant knocking sounds that the MRI emits as it is images you over 30 minutes.  They give you earplugs, but that barely helps.  Happily, I had had an MRI before that imaged my knees before my arthroscopic knee surgeries ten years ago, that occurred six months apart.  So I knew what to expect with the MRI test.

And then the orthopedic PA lined me up to see a pain specialist doctor affiliated with their orthopedic complex–who also happens to be an anesthesiologist–for the following Wednesday June 22—nine long days away.  The pain specialist doctor only sees patients Mondays through Wednesdays with the orthopedic doctor complex, because he sees patients at a different pain center on Thursdays and Fridays.

However, my pain and immobility was so great, that I couldn’t wait that long for help.  When a person is in severe and constant pain, you begin to understand why animals gnaw off their paws caught in a trap—both for freedom and to eliminate the pain.  I couldn’t gnaw anything off.  So after calling/pestering the pain doctor specialist’s orthopedic complex offices staff to see if I could at least see the doctor on Monday June 20^th—in case he had another patient appointment cancellation that they could let me have—the pain specialist doctor amazingly said that he would see me on his lunch hour that Friday June 17th, him driving across town from his pain center offices, to meet me at the orthopedic doctors complex.  The man is up for sainthood in my mind.

What made the difference in the pain specialist doctor deciding to see me that same week?  I don’t know. Perhaps it was a gut instinct on his part.   The pain specialist doctor hadn’t had the MRI results yet from Thursday—since it was just Wednesday when he agreed to see me Friday.  They even asked the radiologist to fast track their review of the MRI image—with my MRI test being late Thursday afternoon– so that my MRI images and Radiologist’s report would ready for my Friday appointment with the pain specialist doctor.  It seems that doctors always have a licensed radiologist review the imaged tests because they are the experts on these diagnostic tests.

And when I arrived at my specially arranged pain specialist doctor appointment at midday on Friday June 17^th, the doctor took longer with me than just his lunch hour—to review my medical history for this health condition and suggest treatments.  He showed me my MRI images and explained what they were.  It was not good—and even I didn’t think that there would be something that wrong with my spine.  You see, what I had been calling back, hip, and leg pain, was really a problem on my lower spine—the lumbar sacral region.  Yikes!

It turns out that I have 2.5 herniated discs in my lower spine, lumbar region–at L3, L4, and possible L5 (right).  I found it extremely interesting that my pain doctor referred to the spinal discs as jelly donuts cushioning the vertebrae—because later when I looked onto the Mayo Clinic web site about Herniated Discs, they said the same thing.

Any way, my donuts have exploded outside of their boundaries (see below) —and they are pushing on the surrounding spinal nerves, causing my right hip/back/leg pain and right leg weakness. Double yikes!
   

My pain specialist doctor proposed the next steps in treatment, which were three fold—each level becoming more aggressive in its medical intervention:

1) to continue with more oral steroids, trying Lyrica (I’m not endorsing this brand, but I noticed a smidge of improvement over the weekend with me being able to take fifteen steps (rather than ten) to the bathroom and back, before the pain and leg weakness started incapacitating me;

2)  the pain specialist could do outpatient surgery  on me at their orthopedic complex surgi-center, with the surgical procedure involving two spinal injections of concentrated steroids at my L3 and L4 spinal discs area—L5’s disc that affects the top of my right thigh had not ruptured/herniated yet, though the pain and weakness in my leg is quite severe;  these injections are not a cure, but steroids can somehow reduce inflammation of the herniated disc;   so if the discs’ herniations decrease, then they might pull back from pressing on the spinal nerves which is causing my pain and weakness;

3) surgery on my spine to remove the herniated discs; so the vertebra would lose their cushions/donuts, possibly causing other problem—as well as shortening might height yet again.

I was not keen on treatments 2) or 3).  But there was another factor motivating my seeking more medical help so that I wouldn’t be reduced to sitting at home immobilized on my hotpad 24/7/365.  My niece is getting married this weekend.  I have to be there.  I cannot miss it.

So the pain specialist doctor said that my best choice to try and jumpstart my healing would be the injections. So that is what I chose—item 2).  And again, the pain specialist doctor was able to slot me into his surgery schedule early Monday June 20^th morning at the orthopedic doctors complex surgi-center—a full two days before what had been my initial appointment with the doctor, that was changed to June 17^th when he fast tracked me.

Naturally, anything to do with one’s spine is scary.  And in the back of my mind, I worried that if the pain specialist doctor’s needle slipped, would I be paralyzed.  But again, I have a wedding to go to.  So I set aside my worries and had the outpatient spinal injections surgery.

A couple of things.  Even though they have you stop eating or drinking anything after midnight—for my 10:25am Monday June 20^th morning surgery that ended up being 11:20am—I inexplicably kept having to urinate while awaiting surgery, even after they put the IV line in me, prior to giving me IV sedation.  Well, I guess part of my herniated discs problem can affect bladder and bowel control.  Great.  But I’ve been a frequent pee-er all of my life.  Wish I could get travel miles for that, but it would be hard to verify.  *wink*

Anyway, as I lay on my stomach for the surgical procedure  they also used a local anesthetic on the surgical injections sites near the base of my spine to help alleviate surgical site pain—thank you!—and they used a light IV sedation to put me under (I was all the way out!  I don’t remember a thing) and help alleviate my back and leg muscle spasms and keep me still, while they viewed my back through fluoroscopy xray imaging to guide their injection needles on either side of my spine.  Well at least they’re not flying blind.

It was all very quick—about fifteen minutes—then I was back in my individual recovery room (with a door and not a shower curtain, thank you!), waking up, and having a clear soda to prevent nausea.  That worked!  However, when they brought my husband back to me in recovery a few minutes later, I noticed something very odd. Though I could move my toes, and even bend my knees, I couldn’t feel my legs—or tush, it turns out—they were almost completely numb.

Let me tell you, having my legs and tush go numb on me was the oddest feeling—or lack of feeling—that I have ever had. And it was a bit worrisome—understatement there.  I wondered if the injections had gone too far and somehow involved my spinal cord?   To his credit, when the recovery nurse told my pain specialist doctor about my numbness, he came right back to see me in my individual recovery room—earlier than he usually does, because he does procedures back to back.  He assured me that my numbness was part of the IV sedation—and that it would wear off, eventually.  Hmmm.

Happily, I didn’t have to go to the bathroom just yet, because I couldn’t have done so, being all numb. My legs would have collapsed to the floor—probably breaking something.  Though at least I was in a place where they could help me.  It took about an hour or so before the numbness started wearing off in my legs and tush—just in time for me to need to go to the bathroom to urinate.  I had enough feeling in my legs that I could stand—and my legs wouldn’t buckle—then I pivoted to a wheel chair with my cane.  Ooh!  I forgot to mention my footed cane earlier.  I had bought it last Wednesday June 15th, to stabilize my walking and such, because my right leg is in so much pain it buckles and I can’t walk very far.  My cane is sleek and shiny black–very stylish (similar to the image at right).

Anyway, when I finally went to the bathroom to urinate—successfully–that was when I realized something else that sitting up in recovery didn’t reveal.  My vagina and surrounding area down there were completely numb—even after an hour in recovery.   It was as if my vagina wasn’t even there.  Now that was a truly odd feeling.  So had I to be very careful not to overdo it in my finishing up.

I’m not a person who talks at length about my vagina and its related  functions.  But I have one, and its numbness was a surgical side effect that someone else might want to know about so they don’t freak out.  I and my vagina have been together for a very long time.  And when you have a vagina, you like it to work—and feel–hopefully in concert with the rest of your body.

Happily, after another forty-five minutes, most of my body parts—legs, tush, vagina–started to feel again as the numbness abated.  Whew!  But they didn’t release me from the surgi-center until about 1:22pm—after having arrived at 9:00am.  For what had been touted as a two hour stay, ended up being 4.5 hrs—and it was a very long day at that point.

After being released from the surgi-center, I should have had my hubby drive me straight home to rest and sleep—since I was still woozy and under the effects of the IV sedation.  Rest?  What’s that?  And with only having my hubby with me on Monday, June 20^th (he had to take off work special to be with me, Love that man!)—he had to go back to work on Tuesday—we spent the next three hours visiting two medical supply stores, trying to line up wheelchair rentals since my mobility was and is still very limited.

Though it turns out that my health insurance will cover 80% of a rental, but you have to have the doctor make a request with medical documentation.  Hey, I could flash my HMO in a medical selfie showing my injection site bandaids at the base of my spine, if they would like.  Somehow, I don’t think that my HMO would appreciate the medical selfie in the spirit in which it is intended.  So I think the MRI and radiologist report will do the trick.

But though my HMO insurance is all well and good, and the first medical supply company had very expensive wheelchairs—motorized and self propel that could not be covered by insurance—I realized that if I was going to try to get back to work on Wednesday, June 22^nd—but two days after my out patient surgery–for even a few hours, I would need a wheelchair now.  I had been resisting getting cane for a very long time now, let alone a wheelchair—and that misplaced prideful mindset was limiting my ability to live my life as fully as I could. So with my difficulty walking and standing—believe me, my previously health self took those precious abilities for granted—I had to put my pride aside and seek to buy what is known as durable medical equipment—not to be confused with durable construction equipment sold by Caterpillar or John Deere.

After going to bed Monday night at the unheard of early hour of 8:30pm—the IV sedation was still flowing in me, but gave me a really good night’s sleep—I woke up Tuesday morning with a mission to find not one, but two wheel chairs.  And because I am a curvy woman, hefty honey, large and lovely, I need the large capacity wheelchair—really durable.  Ha!  So those are obviously more expensive.  But my online wheelchair search Tuesday morning—and after visiting medical supply store # 2 the night before—I found and bought two wheelchairs.

My main wheelchair (right) that I bought and had delivered to my campus department Wednesday is a wheel yourself model with the extra grab wheel on each wheel to propel yourself forward.  So my arms are taking the brunt of moving the weight of my whole body.  My biceps and triceps are going to become so muscular and toned.  I’ll have the arms of … Wonder Woman.  Ha! And it has a roomy 22 inch wide seat.  Snap!  This wheel chair I am leaving in at my university offices—down the hall in a lab room near the elevator.  So I just have to walk the twenty steps with my cane from the handicapped parking spot next to my building to the inside elevator, ride the elevator to the third floor, then walk ten steps more to fetch my wheelchair out of a lab room and propel myself to the other end of the hallway.

My department is in one of the oldest buildings on campus—over 100 years old.  The building is like a block long, seriously.  So the wheel chair will be great in also helping me get back and forth to the ladies room—which is located back at the far end of the hall, of course.  I used this wheelchair yesterday, Wednesday June 22^nd—just two days after my outpatient surgery–when I worked 3 hours in the morning and 2.5 hours in the afternoon. I’m tired and sore, but glad to be back with my colleagues at the university!

Turning around in my self-propel wheelchair, or turning at a 90 degree angle, is tricky—and the doorways on this old building are only just wide enough to pass my wheelchair through them. I have already bruised my knuckles twice on door jams.   So I’m going to buy fingerless golf gloves to protect my hands as I wheel along, and grab on the door jams to finish pulling myself through doors.

The other wheel chair I am buying via the internet is smaller and lighter weight.  Called a transport wheelchair (right) because someone has to push you from behind you, it folds up nicely for carrying in a car and weighs only 19 pounds.  But my wheel chair won’t arrive until next week.  And my niece’s wedding is this weekend.  Happily, my Chairperson and his wife had a transport wheelchair leftover from a family member and they are loaning it to me for this weekend.  Snap!  They’re really great people, and a wonderful couple!

So as I sit here writing this essay Wednesday evening, I am still feeling pain today, but I’m hopeful for it lessening—I could actually brake with my right foot today when I tried driving again—I am thinking upon several lessons that I have learned from this experience:

1)  keep advocating for yourself in seeking medical treatment until you get the correct diagnosis;  it took me five painful months for that;

2) though I might covet a motorized scooter chair—and will rent one for my next foray with Midwest RA Fan gatherings to see his film in Chicago or vicinity—I am grateful that through a bit of dogged research on my part, I was able to find medical mobility equipment (cane, and wheelchairs) to use; and,

3)  life is full of trade offs, and putting off using a cane, or even a wheelchair because of pride is sabotaging oneself; it’s like I told a student one time with a diagnosed learning disability wherein longer test taking times helped him, he said that he didn’t want to ask for special favors; I took off my eye glasses and said to him that I need these to see with, they help level the playing field for me, just as your taking slightly longer to complete tests levels the playing field for you and is not special treatment;  so my cane and wheelchairs are not special treatments for me, they level the playing field and that help me get mobile again as I head back to the office and living my life;

So just call me Mobility Miss—with a new shorter hairdo as of Wednesday night, to go along with my new mobility attitude.  Like I always say, every day I’m vertical, is a gift!

And I will be at my niece’s wedding this weekend—have cane, and wheelchair, will travel.  Snap!  Now I just need to find a handbag and shoes.  *wink*