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SCI

My Spinal Cord Injury

By December 11, 2021No Comments

 On 12 May 2012, I collided head first with the rear of a mini-van riding my bicycle at 26-mph. That’s a 2.2 G force based on my mass with my bicycle and velocity!

As I lay on the road I felt no pain but I soon realized that I could not move anything from my neck down. My entire body felt encased in concrete. As I lay on the road, I saw the driver come out of the car and looked at me with sheer horror. Soon thereafter, a MD on a bicycle saw me and called 911. The Concord MA police arrived and immediately called for the EMT’s. I was carefully placed on my back onto a backboard with my neck fully supported on all sides so that it was immobile. I was driven by ambulance to an unknown location of a helicopter. The EMT’s told me respectively to look straight up, keep my eyes open, and keep breathing. I did exactly what they told me to do – I wanted my body to return to normal. I was terrified beyond believe! What was going to happen to me now?

Little did I know it but I had suffered an incomplete Spinal Cord Injury (SCI).

What is a Spinal Cord Injury?

Many references are available to understand this horrific injury. Many people think of Christopher Reeves when they hear spinal cord injury. However, his was a very severe injury and every spinal cord injury affects a person uniquely. Please see https://www.christopherreeve.org/living-with-paralysis/health/causes-of-paralysis/spinal-cord-injury. I have an incomplete cervical spinal cord injury (see MRI).

What happened immediately after the accident?

The helicopter ride to the top of some hospital was short and I found myself greeted by a band of nurses and police officers as I emerged from the helicopter. It was a nice sunny spring day so what the hell was I doing here?

After realizing that I could not move and was told not to move. I was taken for a total of 28 MRI’s, CT scans, X-rays on a gurney from room to room. All I could do is look up so I had no idea where I was in the hospital. I continued to ask the hospital staff (including the clueless residents), what was going to happen to me. I got the silent treatment so I knew something was very seriously wrong.       

Gotta have traction!

The bones in my neck (C6, C7) were crushed together in an overlapping manner that placed “crimped” my spinal cord like twisting a garden hose to prevent water flow. In order to fuse these two bones in surgery, traction was needed to pull them apart. The very scary part was that the traction wasn’t guaranteed to be successful. If it wasn’t I’d be in bad shape – possibly worse if the traction failed badly.

They prepared me for traction by placing two “screw things” on each side at the base of my skull and twisted them in – yes, it hurt!! They injected more painkillers in the back of my neck. I was under constant fluoroscopy and praying, praying, praying for God to spare me. Then they started with 5 lbs., then 10 lbs., and after about an hour and 50 lbs., they declared success!! Now, they could prepare for me for surgery to fuse my broken vertebrae together. My wife at the time showed up just as the traction began (I don’t know if this is accurate since I couldn’t move and only heard voices and I must have been in shock).

After my surgery to repair my broken cervical vertebrae with a C5 to T1 fusion, I spent about 10 days at the Brigham & Women’s ICU during which time, my physicians told me that I would be bed ridden for the rest of my life.  After four (4) months at Spaulding Rehabilitation hospital, I recovered some, but certainly not all of my pre-injury function. As I grew impatient and intolerant of big pharmaceutical medications to assist my recovery I realized that they only mask neurological problems and do nothing to heal them. I refused to face a life of pill popping and sleeping which is what all of my physicians promised me at that time. 

I was initially introduced to the healing potential of stem cells during my tenure at Spaulding so I put my graduate education to good use and began researching the NIH and clinical trials web sites to understand the benefits of stem cells as a neurological healing media. Since 2015, I have had several adipose stem cell treatments and since 2016, I have had several exosomes treatments. These treatments have contributed in the significant recovery of my autonomic nervous system as well as improving my stamina, motor control, and strength.

Before I go any further, I want to acknowledge all the people that were instrumental in assisting me to date. First and foremost, my X wife, Dr. Fern Halper supported me every single day while I was in the hospital for 4.5 months. My older daughter, Katie Halper-Bogusky provided me with the inspiration to endure each and every day. To all the EMT’s, physicians, nurses, physical and occupational therapists, DO’s, acupuncturists, and massage therapists. I can’t remember them all but I thank God that I’ve had them in my life.

Surgery…

If you’ve ever had serious surgery before, you understand that you remember the beginning and the end during recovery. I was wheeled down to an OR in the basement of the Brigham & Women’s hospital for my I remember waking up in the recovery room with a huge cervical and thoracic collar on me. I still had no pain but I was beyond exhausted. This was the collar that I wore for the next six months day and night!

The ICU …

My next memory was waking up in the ICU with a dozen of tubes, probes, and other medical sensors on or near me. As some of the clouds cleared from my eyes, I saw my nurse taking a look around me and I asked her where I was. She told the ICU at B&W and I asked her when I could leave. She simply said, “When Dr. Chi discharges you”.

I spent about 10 days in the ICU and was visited by my X and two daughters frequently for the first day or so. My brother, mother, and father drove up to visit me from NJ. Aside from my worst nightmare, all of this was understandably traumatic for my entire family. I was helpless to do anything except lay in my bed. This was certainly not the position I had envisioned for my family or me.

Try to move!!

When Dr. Chi visited with me in the ICU, he asked me to move different parts of my body. It had been several days since my accident and they wanted to know the severity of my damage or permanent paralysis. They asked me to move the fingers on my right hand … good! Move my fingers on my left hand … good! Now, move my left ankle and step down with my foot on a gas pedal… good! Now move my right ankle and step down with my foot on a gas pedal… go ahead and move my right ankle… I was trying and they kept asking me to dot it. They kept asking and I kept trying. Obviously, it wasn’t working!! I asked my X if it was moving and she said NO. I was down but I was determined to move my dam ankle on my own … somehow!

One of my most vivid memories of my ICU visit was when one of the monitor alarms was triggered. I heard a rather loud beeping but I wasn’t aware of the source of the noise. I was still rather hazy from the surgery and all of the morphine & opioids they were pumping into me. A couple of nurses came rushing to my bedside to check on me looking very panicked!! Wasn’t I the one panicking? They asked me a few times if I was OK. I told them several times, aside from the obvious, that I was fine. They told me that my heart rate was below 38, which is the minimum heartbeat sensor threshold. They asked me if that was normal and I told them that my resting heartbeat was about 42. Obviously, they didn’t have many well-conditioned athletes in the ICU! They reset the threshold to 32 bps and we all moved on.

I had several physicians visit me toward the end of my ICU visit and all of them had written me off telling me that

I WAS TOLD THAT I WAS GOING TO SPEND THE REST OF MY LIFE IN BED UNABLE TO MOVE!!! MY RESPONSE WAS F*** YOU.

Now rehab begins…

After I was discharged from the ICU, I was admitted to Spaulding Rehabilitation Hospital in Boston, MA. I still don’t remember much and thankfully my X wife was my biggest advocate during the admission process. Depression was beginning to set in as the harsh reality of living my life in paralysis was setting in hard!

I spent my first few sleepless nights sharing a room with another patient on a ventilator that made enough noise to wake the dead! On … off … on … off.. all night long. I begged the doctors and nurses to place me in another room. I was exhausted. Finally, they moved me to a different room.

In short order, I met my nurses, therapists, and other staff member who were going to help me for the next four months. My primary physical therapist was Melissa Agrimanakis who along with my occupational therapist, Meagan Fallon brought me out of the doldrums and my recovery began.

Doctors don’t know shit …

One of the first tests that Melissa administered several tests using an electrical stimulator device. These purposes of these tests were to determine if parts of my body were still capable of electrical conductivity. The very scary part was that if these tests did not help move my muscles, that I was in fact, permanently paralyzed. I prayed and prayed when Melissa placed the pads on different parts of my body and started the stimulator. Fortunately, each test Melissa gave me, worked!! I had the ability to move signals across much of my body. I asked Melissa why all my physicians told me that I was totally screwed. She told me “Doctors don’t know shit!” – that was music to my ears!!

OT to the rescue…

The extent of my injury became very apparent when one of the OT’s asked me to open the top of a dish soap bottle dispenser. I took the bottle in my hand and successfully moved my finger to the top of the bottle but couldn’t push the top off the bottle. This was such a simple thing to do and I couldn’t do it!! I tried again without any success. I was devastated and felt like a huge waste of life – this couldn’t be happening to me, could it? My once extremely powerful body has betrayed me – I’m afraid it all is very real. As I sat in my wheelchair, I did not know how I would function. I’ve been so independent all of my life and now at 53 years old, I will need help for the remainder of my life. What do I do? What could I do? It felt like it was a dead end…

The SCI rehab program at Spaulding is stellar. Three hours per day minimum of therapy as required for a rehabilitation hospital.  That was 1.5 hours OT and 1.5 hours per day PT for me. Meagan Fallon was my OT and she started me off well with some additional strength and coordination tests, tactile sensation tests, pinch and grip strength tests, and basic coordination skills.

Since my level of injury is at C6/C7, my wrists and hands are most significantly affected.  My strength in those areas was very weak. Fortunately, my upper arm strength and should strength were not seriously damaged as much as my hands & wrists. Meagan and I started off very simply. It was a bit of a challenge to roll my wheelchair in and out of the OT station, but whatever, I did, Meagan always greeted me with a big smile and she had glowing red hair that always seemed to shine.

My initial grip and pinch strength was barely measurable during my evaluation which, by any human standards, was depressing. The good news is that thru the months, my grip and pinch strength steadily improved and by discharge time, my grip strength was 50 to 70 psi and my pinch strength was about 18 psi. I convinced myself that I could live with that since I could now open a yogurt container! YAY!! Progress!

A word about insurance…

I was incredibly fortunate that the company that I was employed with at the time (www.vistaprint.com), had amazing benefits that included medical, short-term as well as long term disability. My benefits included paying for all of my emergency services, my surgery, my 4 months in acute rehab, doctor visits, and up to 100 PT or OT outpatients visits per year. Unfortunately, most people don’t have such coverage. Although these limits seem excessive, they are not. A spinal cord injury is one, if not THE, of the WORST injury that can be inflicted upon a human and a lifetime amount of rehabilitation is required.

My advice in dealing with insurance companies is that they are not on your side. They are not your friends. It is business as usual to most of them – at least in the US. The insurance companies pay hospitals and physicians so they will always take their side. You need to have someone advocate for your side very strongly obtaining your maximum benefits. You need to understand ALL of your financial responsibilities.

Many insurance policies won’t pay for includes:

  1. At home caregiver expenses.
  2. Wheel chairs
  3. Adaptive Toilet supplies
  4. Suppositories
  5. Transportation to/from rehab
  6. Transportation to/from work
  7. Any rehab equipment (weights, etc.)
  8. Many other items or services
  9. No regenerative medical procedures.

Always check with your insurance provider before making spending any of your own money.

Some states (e.g. Massachusetts) have state insurance available that provides valuable services such as transportation to/from rehab, paying a caregiver, and others. These might be available for your home state, so please check.