Neck Brace and A Miracle

My neck was came darned near being broken in the car wreck.  I have always struggled with neck pain:  back in high school, I was trying to show off how extremely cutesy and agile I was, and I tried to do a back flip in our gym without a pad.  I had never done one successfully before, even with a pad.  The resulting damage left me in a soft brace for six months, which my mother tried to dress up by covering with attractive fabrics to coordinate with my, of course,deeply  trendy outfits.  Embarrassing epic fail.

 

Anyway, because of that old high school stupidity I have had degenerative arthritis in my neck for years.  Then several years ago, it started hurting so badly that I went to a doctor several times.  After nothing seemed to work,  my doctor ordered a course of physical therapy.  During the PT,  we found that, because of my recent switch to bifocals,   I was holding my head at such a weird angle trying to read the music and look at the students, back and forth, that that was triggering this latest episode. Go figure.

 

So I didn’t start with the greatest neck history.

 

 

 

The impact of a heavy truck, hitting my little car, when he drove through what should have been a stop sign at over 70 miles per hour and hit the side of my car, was….very harmful.   But back to my neck.  Never strong at the best of times, it was slammed back over my headrest so that most of my brain damage was to the back of my brain. My neck condition, was for months, critical.  There was virtually no chance that, if I ever got the brace off, I could avoid an extremely invasive neck “fusion” surgery.  I only vaguely understand this, but as I do comprehend it I would have lost a couple of inches of my neck, and much of the functions the neck performs beyond simply holding up your head and being a conduit for food.  Turning your head, looking around, looking up and down…not so much, apparently.

 

 

 

And one of my vestibular problems, BPPV, was so drastic that I was simply throwing up anytime they would change my position.  Move me. Try to sit me up.  Turn me over.  Roll me over.  Instant spew.  Again, thank God for the coma because I don’t remember any of this, but my family and the nurses certainly do.  To all of you, I’m so sorry.

 

 

Then right when I began awakening from the coma, I was moved to On With Life.  Enter Amy, the vestibular specialist.  She watched my eyes, saw me doing all this spewing business and ventured a preliminary diagnosis of BPPV.  But she couldn’t be sure, and she couldn’t treat it.  The diagnosis AND the treatment both required some pretty fast movements involving my neck, which were clearly impossible with the neck brace on.

 

 

The neck brace came off just before I was released from On With Life in early January.  Until that time, I had been taking motion sickness pills to dampen my vestibular symptoms and make them less noticeable.  The week it came off, I was scheduled for a diagnosis and first treatment.  They put these cool huge goggles on me, brought a trash can over, you know, just in case.  Then you do a whole complicated series of movements, rolls, sitting up, laying down, and all the time people are watching your eyes on a screen to see the fine movements that the nystagmus causes.  I asked Amy one time what exactly they were watching for, and she asked “Do you remember Cookie Monster’s eyes when he would see a cookie?”  “Well, it’s a lot like that.”  Interesting.

 

 

At first without the neck brace there was a LOT of neck pain.  Because of all the trauma to my neck, and because it had been immobilized for months, my neck was simply unable to support my head.  Its ligaments were basically noodles.    By evening it would be aching really, really badly.  I slept in my old neck brace for months.

 

 

All the time I had been in the brace, I had had to sleep flat on my back.  My normal sleeping position had been on my stomach.  After the brace came off, I couldn’t lift my head high enough to get it on a normal pillow.  We found the coolest travel pillow, very bendy, with the center cut out of it.  I slept on that, flat on my back, for another year.  Now I sleep on a low pillow on my side, but I still spend at least half the night on my back.

Thousands of people were praying for me.  Praying, first, for me to awaken from my coma, and to not stay in a “vegetative state.”  And then, when my family realized the extent of my neck injuries, they requested prayers for that.  But first was for me to WAKE UP.  After several days in a coma the odds of you ever waking up, or regaining any real function, drop drastically.  My family, my doctors, and most of all my insurance company were acutely aware of that.

 

And then, I started waking.  And then, within a few days,  a bed became available at On With Life,  I was delivered there by ambulance, and the progress was phenomenal from then on.

 

People were praying for my neck to heal:  Thousands of people, through my Caring Bridge, were praying,  and for this surgery to not be necessary.

Three months after the accident, I went for my first set of neck X-rays.  It was guardedly optimistic.  Much better than expected, certainly, but far too soon to tell if the weight of my skull would still drive my head down into my neck, making the surgery necessary.  Come back on the one year anniversary.

 

We came back at one year.  More X-Rays.  The doctor came into the room.  Very, very good.  Almost less than one millimeter of my head settling down into my neck during the first year, which was the danger point before my ligaments were strong yet.  Still too early to be absolutely sure, but if the two year anniversary was just as good, he said I would never need to come back again and NOT NEED THE SURGERY.

 

Two year appointment.  No fear at all in my heart. In the  last appointment I had asked him for neck strengthening isometric exercises he could show me, and I had been doing them regularly with no pain.  I was turning my head so much farther, looking around me so much more normally.  I felt total peace whatever he said.  I knew God had it.

 

After I had the X-rays taken downstairs, we went up and waited a little for him to read them.  Finally he called me back into his office.  He started out, as my husband said he always did, with a history lesson.  I could wait.  I knew it was going to be all right.  Then he got to the point.  He said “There’s virtually no more settling of your head into your neck.You never have to come back and see me.”  And then he kept looking at them, and looking at me.  “It’s odd.  The only explanation for why you avoided injuring your neck more, and didn’t need the surgery, was your coma.  If it had been even a week shorter, I think we would be looking at a very different set of circumstances with your neck.”

 

Sometimes God says “Yes.”   Sometimes He says “No.”  Sometimes He says “Wait.”

 

My husband says that he still wishes when all those panicked prayers were going up to Him….because every single day and hour that you don’t wake up increases the likelihood THAT YOU NEVER WILL!  He’s the Creator of the Universe.  Would just a text message have been too much?  Just an “I got this one” or something?  And I gotta say, that’s a question we’ll ask when we get there.  But not right away.  We’ll be too busy thanking and praising Him for stuff.   Amen.

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The Chair

The Chair From The Depths Of Hades.

 

It is called the Rotational Chair Test.  Here is the online definition:

The chair test measures dizziness while the subject is being turned slowly in a motorized chair 

                        and….  

The rotary chair test is used to help determine if your symptoms are due to a disorder of your inner ear or a disorder of the brain. Eye movements are recorded with small electrodes similar to those used during the ENG test. Not all individuals need a rotary chair test to assist with diagnosis and many health care facilities do not have access to a computerized rotary chair. The rotary chair test allows measurement of responses to movements of the head that are closer to speeds encountered in daily activities. During this test, the patient sits in a computerized chair that moves. The rotary chair test is very useful in determining if an individual has a problem with both sides of the vestibular system (bilateral vestibular loss.

I feel my  overwrought hysteria about this test perhaps needs a bit more explanation.  Allow me…

First:  Pre-accident my vision was so  exceedingly poor that I was totally dependent on my glasses.  Almost any physical punishment was preferable to my glasses being broken.  I couldn’t even find my glasses without them on my face.I was very near the “legally blind” parameters.  Because of the goggles they have you wear for the test, you can’t wear glasses.  I am lost without my glasses. Totally vulnerable and afraid to move.  Childishly near tears immediately.    My husband had to help me to step up into the “dark room”, which was a very menacing chair placed on a platform (I know my husband will say it was “just a chair” but I’m sticking with my story) inside a totally closed capsule.  God help anyone with the slightest hint of claustrophobia, because there were no warnings of that at anytime before the testing.

I now see double without my glasses because of the brain trauma.  Did I mention that the test was SANS GLASSES?  Oh yeah, I think I did.

Second:  The accident left me with PTSD.  I was on anti-anxiety drugs, anti-depression medication, sleeping medications.  For this test to be successful, they had stipulated that I was to be drug free for 48 hours before the test.  So, basically, I hadn’t slept AT ALL for 2 nights except for brief naps from total exhaustion.  And just wait until you hear what comes next.

Third:  The test was scheduled for Tuesday.  That Saturday morning, our much- beloved family dog, a yellow labrador retriever named Remo, who was over 12 years old, finally was unable to get up off his fleece in the kitchen.  My husband and our son carried him into the yard and helped him stand so he could go to the bathroom, and then carried him back up on our deck and laid him on a blanket.  The entire rest of the weekend he kept slipping in and out of consciousness.  It was unspeakably difficult to watch.  Monday morning my husband called the vet and they made an appointment for a couple of hours later.  Remo had been our family dog with all that entails. The laughter, faithfulness, joy, stories, parties, camping trips, kayaking, singing along with my voice lessons The morning he was being put to sleep was the first morning I was scheduled to be off of all my medications.  We had waited months for this appointment, my husband had scheduled the entire day off already.  We needed some answers.  We were going.  Come hell or high water, and this was pretty darned close.

Back to the capsule.  I hear the woman’s voice coming through a speaker somewhere in the darkness. I try to concentrate on the directions, but I am so extremely afraid I am having real trouble keeping it together.  I am determined not to break down after we’ve come through all this.  I’m finally here!  I finally am just praying one word with tears running down my face.  Please.  Please.  Please.

Fourth:  Immediately after the accident I lost all concept of right or left.  The first part of the test was showing a tiny red laser light on the wall, which of course I couldn’t see at all, and I was supposed to tell if it was moving right or left.  The woman was given NO IDEA at all of what my medical history had been, she was just to administer the test.  My husband was out there trying to explain, and I was inside having a total meltdown.  Finally he opened the capsule, put my anxiety stone in my right hand, closed my fist over it, and had me repeat after him “right.  Right.  Rock right.”  Finally I had it.  He closed the door again.  Back to the dreadful, terrible, awful, stifling darkness.

And somehow we held it together.  I wasn’t alone in that dreadful place.  Someone was there with me.  Jesus was with me in my childish fear and isolation.

We had been waiting in this particular doctor’s office for several hours.  First one waiting room, then an interview with an assistant, then another waiting room, and so on and so on.  Now it was hours later, both of us were starving and I was scared out of my wits and my husband was worried to death for me, and the doctor had just rushed into the r00m, asked if we had had this particular test yet.  When we replied “No,” he had sent us down to this lab.  The sheet from the morning had said “don’t eat the morning of the test.”  Luckily I had eaten a granola bar because now it was after 2:00 with no end in sight.

 

There were several tests.  The chair kept stopping, turning, the voice kept issuing directions that I would desperately try to follow.  My husband said it was maybe 30 minutes.  It seemed to me like an eternity of pain and chaos.  Tears kept streaming down my cheeks.  The lady kept asking if I needed to stop, and sometimes I would for a bit.  Sometimes my husband would open the door for a while and reach in and hold my hand for a while.  They were both so unbelievably kind and gentle.  The lady was simply appalled that they had sent me down without giving her any warning at all about my situation.  I was just so grateful for the knowledge that both of them were keeping watch out there.

By the end I was just a broken, sobbing wreck.  Praying for Jesus to please hold me.  Which He clearly was.  The lady’s sweet voice would ask me a question, I would breathe and ask Jesus to help me, and He would whisper peace to me.  We got through it.

Then back to the doctor’s office to await the results of the test.  Which was definitely the worst thing ever.  Ever.  Ever.  We had been sustaining ourselves throughout this entire ordeal with the hope of finally getting some answers if only I could just hold on and make it through the test.  And finally I had DONE IT!!!!  Triumph!!!

Back to that  last blasted office.  He rushed in again followed by an assistant or two,  And delivered this verdict.  That he wasn’t sure why On With Life had recommended he see me.  That he could only find a small amount of residual vestibule damage.  What he had found (not him, of course.  One of his assistants.) was significant cerebellum damage which accounted for my balance issues. He seemed surprised that none of my doctors had figured out that the cerebellum damage was responsible for my balance problems.  He seemed to think that, because he could find very little evidence of vestibular damage now, that must never have been my problem.

When I inquired about exercises for the remaining vestibular problems, and the cerebellum damage, he stated that he wasn’t aware of any.  When I asked again, trying to pursue possible places that did physical therapy, or exercises for balance that I could do at home, he just shrugged and would not, or did not, comment.  The unspoken message in the room was that I would never get better than I was.  It obviously wasn’t his issue.  He was in the business of diagnosing problems, not solutions. “Hope” was not his MO.  We’ve run into several doctors like him, and I have come to despise this philosophy.  Medical doctors by no means are required to be experts in rehabilitation but they DO NEED TO BELIEVE IT IS POSSIBLE and be willing to point their patients in those directions  We’ve run into these situations over and over and over again. You would think when they  see and hear my story, they would change their tune, but apparently not.  Apparently not.

That trip was a major setback.  I was sick from the test itself, sick from losing our loved pet, sick from being off my meds for so long, severely depressed.  I lay on the couch for days.  Finally our daughter, who was back in New York, got so worried that she called the vestibular specialist at On With Life.  Amy called me back.

She announced what we had heard from that doctor, about my vestibular problems being almost nonexistent now, was great news.  I said “How is it great news?!”  She said, “It means that our initial treatment worked really well, and also that you have been doing a great job at home with your therapy!  This is really great intel!  Now we know that your problem must be combination of anxiety and cerebellum damage, and there are definitely exercises we can do for that!”  The way she said ‘WE” suddenly filled me with hope.  Along with the “get on with it” tone in her voice.  I sat up on the couch, and asked what the first step was.  She explained, and my doctor certified me for another 3 months of out patient therapy at On With Life.  We got me back seeing  a therapist weekly  for my anxiety.   I had mourned, and rested, long enough.  Time to get back work.

Back on track.  Back moving forward.  Back getting On With Life.  They have a magical way of seeing a diagnosis not as a stopping place, but as just ruling something out, so that you can start exploring other possibilities. When the doctor told us he found very little sign of any vestibular damage, Amy knew how severe mine had been.  I had been throwing up constantly every time they moved my head, until Amy had diagnosed it.  I HAD been doing my exercises multiple times a day!  Amy heard success where I had only heard echoing disappointment.

I understand this test is the gold standard of vestibular tests.  We’re definitely fortunate to have a facility in our state that has this test available.  I don’t mean to frighten people away at all.  I know that my circumstances were, hopefully, very, very unique.  I’m just being brutally honest about my perception of this test and its echoing repercussions.  People have this test all the time.  I’m sure the sweet lady was as traumatized as I was.  They should have given her at least some warning.  There’s a an extremely large chasm between me and someone who is experiencing bouts of puzzling dizziness, which was everyone else we seemed to be seeing in the waiting rooms.  The majority of them had driven themselves, or at least were walking by themselves.

Thank goodness the doctor decided not to do the water test, whatever THAT was.  Apparently my results weren’t bad enough for that….we’ve often debated what that would be. I sometimes wonder if it is in anyway connected with how they used to test for witches.  I am just am certain I don’t want to find out, so please don’t tell me if you do know.