Appendix A: Lessons Learned

Why we wrote this book

To warn readers of the high risks involved in falls for those who have embrittling cervical spine conditions. Doris was aware of the need for surgery as early as 2003. She saw her neuro-pain doctor; had MRIs and other tests after experiencing pain, hand numbness, dropping items often, etc. Diagnosis was an ossified posterior longitudinal ligament in her neck.

Her doctor called himself a neurologist; he was not a neurosurgeon. He advised her against surgery to correct the ossified ligaments, suggesting that surgery would affect adjacent vertebrae, requiring up to five surgeries over time. He added that, if she could tolerate the pain, possibly another health issue would kill her in the meantime. He never advised her of the risks of a simple fall on her chin paralyzing her.

I met a woman in Orange Park, Florida, within days of Doris’s injury. She had had a laminectomy and fusion of vertebrae in her cervical spine after her neurosurgeon advised her that her condition was so critical that a slap on her back could very well have paralyzed her.

Thousands of people may be at risk. *Take this warning seriously.* If one checks the Christopher Reeves Foundation’s website, one is amazed to find that 5.4 million Americans were living with paralysis in 2019. Therefore, we know that Doris’s experience is not unique, and we met many people with similar conditions after her injury. Several have reacted in amazement at the extent of her injuries, especially those who had fallen, because their doctors had advised them of their good fortune in not being paralyzed.

Hindsight. Had Doris known the high risk of paralysis from falling on her chin (as in her case), she probably would have bent from her knees instead of leading with her chin. Hindsight would also tell you that had she bent from her knees to ensure that she would not fall on her face, her chance of paralysis would have been minimal or even nonexistent.

Importance of seeking proper care for a spinal cord injury (SCI), both at the time of the injury and for long-term survival (coping with SCI thereafter). It was truly a blessing that Doris was sent to Shands Hospital at the University of Florida. Our advice to you is to seek care at qualified SCI facilities and with qualified personnel at all costs. SCI patients’ survival depends upon it.

We were asked to visit a paraplegic at our local hospital to show him that he could cope with his injuries with proper care. This was several weeks after his back-surgery-gone-bad had resulted in his paraplegia. We were shocked to find that neither physical nor any other therapy had yet been initiated.

The problem was that his wife had bounced him from hospital to hospital in the area. She jerked him out of the first hospital in a panic and, with no bowel or bladder control over time, he was in the hospital for a urinary tract infection at the time of our visit. Proper care for his paralysis at, say, Walton Rehab in Augusta, would have saved his life. Sadly, he passed away from complications within two years of his paralysis.

Our observations during Doris’s SCI specialty facilities strongly suggest that the world needs to know more about SCI injuries and how to cope with them. The nightmarish few days and weeks immediately after a tragic, paralyzing injury are life-threatening for the patient, and they are completely shocking and overwhelming to the family and friends.

All spinal cord injuries are different; however, we believe that any published information about coping with SCI can be helpful. Our first few days in the Orange Park, Florida, hospital were focused on the survival and comfort of the patient. I lived on adrenalin.

Once we arrived at Shands Hospital in Gainesville, Florida, which was a Neuro Team haven, we finally had some hope and a path forward on which to focus.

We quickly became aware of patients with similar injuries around us. The comforting part of the environment was observing the highly skilled medical and physical therapy professionals at work all around us.

Subsequent rehabilitation at Brooks Rehab Hospital in Jacksonville, Florida, brought us into the hopeful new atmosphere of therapies that were restoring mobility to SCI patients to the extent their injuries would allow. Brooks also conducted daily training classes to prepare me for Doris’s care at home.

Observing other Brooks patients gave us much to tell about and to be thankful for. One patient, a car-accident victim with a complete spinal cord injury similar to that of actor Christopher Reeves, had a rough time but hung in there and was an inspiration to us. This gal had been at Shands Hospital with us. Her husband and I had bumped into each other at Shands and were surprised to find each other at Brooks.

Well, we had two choices, the rehab at Shands or at Brooks. My decision was simpler; I had family nearby. Also, I believe Brooks was better prepared to treat and rehab complete SCIs.

A couple of patients had become completely paralyzed after a short period of time from spinal infections. Both were transfers into Brooks for rehab from initial care at the Mayo Clinic in Jacksonville. These patients recovered from what must have been a horrifying four or five months of being paralyzed and fortunately recovering from it.

The point here is this: How many such patients find a Mayo Clinic to help them?  How many simply spend the rest of their lives coping with SCI unnecessarily? You read earlier about the older man paralyzed by simply rolling off his two-foot-high deck. Brooks Hospital’s Physical Therapy and Occupational Therapy experts brought him back to walking with canes.

Doris had concerns and wanted to alert women to adhere to their doctors’ advice; care for calcium and bone-density deficiencies. In Doris’s case, she had undergone stomach surgeries that adversely affected calcium conversion, resulting in a drastic reduction of her body’s calcium level. Severe calcium deficiencies will result in calcium leaching out of the bone and ossifying ligaments in very fragile locations such as the cervical spinal cord itself. These patients should seek a doctor’s care and should take calcium supplements as directed to reduce the risks of ossified ligaments.

Patients with brittle cervical spine conditions should never be in a posture from which they could fall in such a way as to hyperextend the neck. I met a lady recently whose mother had this condition, and she fell on her face, fracturing her neck, including a vertebra higher than the one where Doris’s fracture was, while simply walking across the road to her mailbox. She died four days later.

The world is not ready for SCIs. We are living in a time with many more brain injuries and SCIs than ever, with our young people getting injured in war. Proper SCI patient care is regrettably uncommon. Our SCI facilities in South Carolina are not much changed from 2006, when Doris’s tragic injury happened. We in South Carolina are in the dark ages for treatment of SCIs. Most states like South Carolina do not have rigid, enforced qualifications for facilities claiming to be SCI facilities.

Much has been done to improve SCI treatment. It is not uncommon to see SCI patients walk again. More states should institute care for SCI and brain-injury patients as Florida has done. Florida pays for costs of SCI care from the time of the injury, including also home modifications and a wheelchair van. The Florida Brain and Spinal Cord Injury Program is funded by DUI fines. South Carolina is a leading retirement state, and it should have a program similar to Florida’s.

A positive “Never-Say-Never” attitude on the part of the patient and his or her family is essential to coping with an SCI. Doris and her family epitomized a positive attitude that provided eight years of positive results.

Seek solutions and find good in every challenge: Meet them head on. Medical care providers cannot predict recovery from SCIs because much of it depends upon the patient’s commitment to respond to the rehabilitation therapist as directed.

A paralyzing SCI is a terrifying injury; it compares closely to death. It is traumatic for the patient and for loved ones and friends.

All SCIs are different, as stated earlier. Doris’s was classified an “incomplete” SCI, with some hope of recovery over time. Injuries to the central spinal cord will not heal. However, injuries to several other nervous systems typically affected by an SCI may heal.

Healing, if possible, occurs at the slow rate of microns per year. A recent study revealed that scar tissue has a role in recovery time. Hopefully that study has already affected SCI treatment.

The patient’s and caregiver’s attitudes and their commitment to recovery are essential.

What to expect at initial care & treatment

Emergency responders must be qualified to handle SCI Patients. Doris’s first responders were not qualified in any way, shape, or form to handle an SCI patient. They simply rolled her onto a litter without even putting a neck brace on her.

Proper care has been demonstrated all too often on football fields with current protocol. Many of you have seen the process of stabilizing the patient's neck before any movement to a litter.

Unfortunately, Doris may have been more severely injured by poor initial handling.

Emergency Room care must be unique to the demands of any suspected SCI. A 23-hour intravenous steroid regimen must be administered within five hours of the injury. Doris’s ER neurosurgeon at the Orange Park, Florida, hospital initiated proper protocol.

Other protocols, such as lowering the body temperature by chilling, are done today with better results. These protocols reduce swelling and, hence, spinal cord damage at the site of the injury.

Doris’s pain levels were off the chart in the Orange Park ER and, in my opinion, she lay much too long in pain while waiting for physician-ordered meds to relieve it. She suffered too long at high pain levels owing to that ER’s triage procedures of treating patients in the order received rather than by severity of need. She received pain meds only after threatening to scream. She usually tolerated pain very well—but not that time.

Seek out the best available neurosurgical team before corrective surgery. The initial attending ER neurosurgeon should be able to give advice regarding his and his hospital’s capability for any corrective surgery.

Doris’s ER neurosurgeon at the Orange Park hospital realized after looking at the CT scan that he could not deal with her injuries immediately. We were blessed that he gave us a great referral to Shands Hospital at the University of Florida.

The message here is to be prepared to seek advice and change hospitals as necessary for follow-up surgeries. Do not leave any stone unturned.

The power of physical therapy with SCI patients. Physical therapy (PT) is most essential to recovering whatever mobility may be possible after SCI corrective surgery. Initiation of PT must be within hours of corrective surgery.

Doris’s PT evaluation was done within 10 to 12 hours after her surgery at Shands Hospital. PT was started within a day, and that made possible every bit of the mobility she recovered. Her brain had to be completely retrained on any motor functions that she was able to recover, owing to the limitations of her SCI.

This book provides the details in her own words. Her caregiver (the author) was forever amazed at the power of PT, both during initial rehab and during as many as six times per year, in helping patients who were recovering from debilitating in-patient hospital care. As caregiver, I learned all aspects of SCI patient care from the PT experts in our lives at various times.

PT personnel taught me how to transfer my patient by using a simple transfer board or by a total-lifting Hoyer Lift. They also taught me the proper exercises and how to lend proper support during walking exercises. They provided confidence and security in safety belts to steady Doris when we eventually got to use the walker.

PT personnel taught me how to position myself to catch Doris on my left leg and safely lower her to the floor in the event of a fall from the walker. Also how to use the Hoyer Lift to pick her up safely off the floor and to put her back into the bed or the wheelchair.

SCI patient transfers at home and in nursing-care facilities must be limited to trained and qualified caregivers and to health care providers. As you can see, I was properly trained to transfer Doris. Unfortunately, she had bad experiences over time with untrained aides while in nursing-care facilities. These were facilities claiming to be qualified. One would be surprised how easy it is to transfer a patient across a short transfer board onto a wheelchair. The point here is to know what you are doing before transferring an SCI patient.

Care to prevent wheelchair skin-pressure contact sores or bed sores. Procedures must be followed when coping with immobilized SCI bed- or wheelchair-bound patients. Patients must be moved side to side every two hours in bed.

Alternatively, one can employ an air mattress designed to shift the patient sufficiently from time to time to prevent bed sores.

Wheelchair patients must be boosted or laid back to an “astronaut-launch” position every half hour. Doris’s wheelchairs provided the boosting position.

Patients with skin-contact allergies to latex must be cared for continually as directed by the attending physician.

Bowel and bladder care. Bowel and bladder care are essential to coping with an SCI. Most SCI patients lose bowel and bladder control.

Brooks Rehab had to retrain her bowel function, a critical process that worked to perfection. As caregiver, I learned how critical this was to subsequent care at home. The bowel must be managed daily with proper food intake and with any stool-softening supplements necessary. Be prepared to perform digital support as needed, but understand that bowel function is to be repetitive, for it is essential to survival.

Ongoing care for loss of bladder function is also critical in coping with an SCI. Doris’s bladder function never returned. I was taught how to empty her bladder manually, a function I performed at Brooks Hospital, and also at home from April through December 2006.

The catheter was a sterile, packaged device, a bag with an enclosed catheter that I positioned and manually released into her urethra to drain the bladder. Unfortunately, the second and following years of bladder care dealt with an indwelling Foley catheter owing to the use of diuretic medications and to recurrent urinary tract infections (UTIs).

The indwelling catheter caused a whole new set of SCI-coping issues with infections and latex-allergy-related skin care. As a male caregiver, I quickly learned what women go through with UTIs. Doris would become non-responsive. She would call my name with me standing right in front of her. On such occasions, I would call 911 and transport her to the ER.

Autonomic Dysreflexia (AD): A violent, symptomatic reaction caused by inability of the patient’s brain to communicate below the SCI location. This is typical for injuries of the cervical spine. Simply put, the brain goes berserk, driving the vital signs off the charts when there is a stimulus below the injury site, even one as simple as an ingrown toenail, a full bladder or bowel, or a UTI or some other infection.

Doris’s temperature would rise as high as 105°. Her blood pressure would rise to 230/150 or more; she would have terrible headaches; and she would sweat profusely from her neck up. She would wake up in the morning to a soaked pillow. Scary times indeed.

Emergency Room (ER) care and interacting with medical personnel. Caregiver’s interaction with ER care personnel can mean life or death to your SCI patient. Most ER doctors are not prepared for SCI patients.

Brooks Rehab provided me with a card that read as follows:

Medical Emergency, this person is liable to suffer autonomic dysreflexia (exaggerated autonomic responses to stimuli if one or more of the following symptoms occur) a severe headache, nasal congestion, hypertension 180 to 300/140 to 160 blood pressure.  Bradycardia, blurred vision, sweating, gooseflesh, facial flushing.

The card goes on to provide instructions for the doctor to examine bowel and bladder issues and to examine the body for pressure irritation or stimuli that may trigger responses.

I was given medicine to lower Doris’s blood pressure when it exceeded 180. On one occasion, I asked the ER doctor why he was discharging her with a 205 blood pressure reading. His response was he was concerned that he would put Doris into a stroke by administering a medicine that rapidly lowered her BP, a procedure I had been doing for months. Be prepared to provide this kind of info to the ER doctor.

Later on, I found that it was critical to Doris’s survival to give ER staff members who did know her information about the antibiotics used to treat previous UTIs. Doing so prevented sepsis. It typically requires 72 hours for a culture study to determine the patient’s antibiotic sensitivity to the UTI. Treating some UTIs immediately with the antibiotic combinations used in the immediately preceding infection sometimes worked well and reduced hospital time by several days.

Leg spasms. SCI patients experience show-stopper, seconds-long leg spasms where the legs shoot straight out with pain when the patient is shifted or moved. Leg spasms are violent, involuntary movements caused by lack of communication between the brain and the spinal cord. Doris was not supposed to have leg spasms as an incomplete SCI patient. We can report that she had them, and they often happened when I moved her in bed or repositioned her in her wheelchair. Be prepared; they are not pretty.

We were in a doctor’s waiting room, and we watched as a young man in a wheelchair had leg spasms. His caregiver never seemed to know what was going on.

Patience and faith: Never say never. Our first rehab doctor told us to expect no further recovery after two years. Doris proved her wrong.

Progress or mobility improvements evolved with PT, as we discussed earlier. However, over time, and as long as six or seven years later, I would notice improvement. For example, I initially lifted her feet on the foot pads in the wheelchair. One day her legs shot upward, to my surprise.

The most memorable time was when I was pulling her up to her walker off the bed, as I had to do in shifting her to the wheelchair. On those occasions, she would rotate 90 degrees before sitting down. But on this most memorable occasion, she bent down and straightened her dress with her left hand! All I could say was, “When did you start doing that?!”