“Your shoulders are a mess.”
When my orthopedic surgeon delivered the news in 2022, I already knew the headline. Thirty-nine years as an active T10 paraplegic had taken their toll. My shoulders were hurting. Having written about shoulder health in New Mobility for close to two decades, I found the doctor’s news sobering but not unexpected.
A 2013 study reported that 15.5% of nondisabled people develop rotator cuff tears in their 60s, and a 2022 study found the rate of rotator cuff tears in users of wheelchairs and crutches by their mid-50s at a whopping 93%. Like our skin, our tendons become thinner and weaker in our mid-50s and beyond.
At 64, I was experiencing this firsthand. Meanwhile my mind still thinks I’m in my 30s and was trying to swallow this bitter pill as I searched for a way back to the pain-free shoulder strength of my youth.
Navigating that path in the years to follow proved to be a journey of stops and starts — constantly reweighing the benefits and drawbacks of surgeries and treatments to relieve my pain and help me get back to active living. Through all the frustration and uncertainty, I learned a great deal and came away with loads of new information that helped me confidently make the right decision. Here’s my story.
Trying To Avoid Surgery
I’d had bouts of shoulder pain prior to my 2022 doctor’s visit, but a combination of rest, icing and stretching usually worked well enough to bounce back. If not, a round of physical therapy would do the trick.
That changed in 2018. My left shoulder started aching and got worse with each long push or day of serious sporting activity. When PT and extensive use of my SmartDrive power assist didn’t eliminate the pain, I feared I’d torn my rotator cuff.
Hoping to avoid surgery, I decided to look into orthobiologics — biologic injections of cells derived by spinning down one’s own blood (creating platelet-rich plasma, or PRP), fat or bone marrow to enhance healing and relieve pain (see Orthobiologics). I knew treatments were pricey and not covered by insurance, but I’d written about wheelchair users who used this option to avoid shoulder surgery and figured it was worth a shot.
An ultrasound showed a tear in my supraspinatus, the tendon on top of the shoulder, responsible for lifting up the arm. An MRI confirmed many full-thickness and partial tears in the rotator cuff; a full biceps tendon tear that was retracted; worn down collagen in the tendon; a torn labrum (cup-shaped rim of the shoulder socket) and moderate osteoarthritis.
The doctor said that injecting orthobiologics wouldn’t regrow major tears but would reduce inflammation and aid my body’s ability to heal, in turn helping reduce pain and improve function. I was tempted to try, but at $2,400-$5,300 per shoulder, it was out of my league.
The other option offered was a cortisone injection. On the plus side, cortisone injections reduce inflammation, which can reduce pain and help the body’s healing mechanism. An added bonus is it’s covered by insurance. The downside is that cortisone injections are toxic for tendon and cartilage cells, which is why physicians limit the number you can get per year. Plus, I’ve heard of surgeons who won’t do tendon repair on a patient who has had cortisone shots within three months. The idea of toxic temporary relief for my already compromised shoulder didn’t sound like a good idea.
I opted to go for another round of PT. It calmed the pain, but not completely. Still, as long as I stretched, kept using my Theraband exercises and didn’t push it too hard, my shoulder didn’t complain too much.
A Fateful Fall
That is, until 2022, when my caster caught a rock and pitched me to the pavement. Rather than risking another fracture to my osteoporotic legs by doing the “tuck and roll” and hopping back in my chair as in my younger days, this time I braced my palms against the pavement to check my fall. Instant and excruciating pain shot through both shoulders.
When they still hurt weeks later, I knew I had sustained additional, serious damage. To add insult to injury, I had recently met my soulmate, Debbie, and we had started planning a life of sports, adventure and travel. A depressing loop began playing in my head: “I finally meet the woman of my dreams and my shoulders are messing up our plans.”
An MRI confirmed that the fall caused additional damage to my left shoulder and major rotator cuff damage in my right, including a full-thickness retracted tear to my supraspinatus tendon. Now my right shoulder was worse than my left. I signed on for more PT, drew a deep mental breath and resigned myself to getting my shoulders repaired.
Asking my doctor who he would go to in my situation led to my meeting Dr. Alan Hirahara, a renowned sports medicine surgeon. After his comment about my shoulders being a mess, Hirahara said, “You have a big decision to make. I can repair your shoulders using a superior capsular reconstruction (SCR), which uses tendon from a cadaver to mend the larger tears, but rehab as a wheelchair user is really tough.” (See “My Recovery from Reverse Total Shoulder Replacement.”)
He said I should expect a lengthy rehab with no transfers for six months per shoulder, and in his experience, it takes 1-1 ½ years per shoulder to get to full recovery after surgery. He added that after all that, there is no data on how well or how long this repair holds up with the unusual forces that wheelers put on their shoulders, especially during transfers and pushing.
My biggest fear was spending months in a skilled nursing facility. I’ve heard too many tales of people going in healthy and coming out with a serious pressure ulcer, often from understaffing and not being turned enough. I was determined to rehab at home, which would be costly but worth it.
The author bought a used Freedom Trax to get around his yard without aggravating his shoulders.
I arranged to borrow a power wheelchair with tilt and recline. I started getting bids for a roll-in shower, checking online for a used ramp van and a transfer lift, and asking peers about how to find attendants. The price for all this, even for used equipment, was staggering. And the thought of having to rely on an attendant for everything from turning in bed to transfers and toileting for four to six months was overwhelming. Fortunately, a friend of mine with a midlevel cervical spinal cord injury could put it in perspective, “Yeah, it is overwhelming at first, [but] I just refer to it as ‘a normal Tuesday.’”
On top of all that, before I could schedule shoulder surgery, I needed surgery to fix a rectal prolapse that appeared during a bowel program. I wanted to reduce the possibility of disaster while I depended on home health workers during recovery.
The rectal repair ended up taking several surgeries over 1 ½ years and eventually led to a colostomy. It wasn’t something I’d planned on or wanted, but it made sense to remove the hassle of needing to do a bowel program.
In the meantime, I tried to schedule my shoulder surgery. However, Hirahara explained he wouldn’t even consider scheduling the shoulder surgery until at least three months after colorectal surgery to be sure that post surgery bacteria didn’t infect the repaired area.
Discouraging Odds
Throughout this odyssey, I kept up with my PT exercises and made a number of life changes hoping to reduce my shoulder pain and get me back to being active. I swallowed my pride and signed up for In-Home Supportive Services to relieve myself of shoulder-intensive household chores. I added Frog Legs suspension caster forks to my chair and adjusted my seat to reduce chances of another fall. I started using my SmartDrive full time and purchased a used Freedom Trax, the treaded outdoor mobility device that enables me to get around my yard and elsewhere with ease.
I used the colorectal-surgery time to learn as much as I could about surgical outcomes and options. What I found was discouraging. Studies of success/failure rates in surgical repairs of massive rotator cuff tears in general show postsurgical failure rates ranging from 30% to 57%. And when you consider that the failure rate among wheelchair users is likely higher because of the extreme forces we put on our shoulders, it grew even more discouraging.
Following up with the wheelers I’d interviewed about their major rotator cuff repairs also left me less than encouraged. Their success/retear rate was about 50-50. On the positive side, Doug Garven, 52, in his 30th year as a T6 para, and Matt Feeney, 56, in his 31st year as a T9 para, both reported that their shoulders were doing well after undergoing SCR surgery to repair full-thickness retracted tears in their supraspinatus tendons. They had normal range of motion, though it took well over a year to regain full strength, as the months-long post surgery rest phase caused shoulder muscles to weaken.
On the downside, two of the wheelers I spoke with had complete failures. In 2018, Bill Bowness, 60, in his 42nd year as a T12-L1 para, had SCR surgery for a full-thickness, medium-size tear of the supraspinatus tendon, which completely failed within six to nine months. “This is my third tendon repair and I don’t plan on going through it again,” said Bowness. “I’m going to get as much mileage out of what I have in this shoulder, and when it gets too bad, I’m going for a total reverse shoulder replacement.”
In his 48th year as a T12 para, Eric Stampfli underwent surgery for three torn tendons in his right shoulder, but the repairs failed within six months. “I was good at following after-surgery protocol, no transfers and minimal use of the arm for three months following surgery,” he said, “but after six months, the tendons started tearing again and an MRI confirmed everything had failed.”
Additional information that gave me pause for a surgical repair or SCR: One report suggests that among the general population, age plays a factor in the retear rate following rotator cuff surgery, and a 2020 study concludes that the risk of retear after rotator cuff repair doubles between ages 50 and 70.
It is important to note that among the general public, and anecdotally among wheelchair users, the best outcome for healing and staying healed after rotator cuff repair is when you have an acute tear. One orthopedist told me, “If you have a fall and have a big rotator cuff tear, that’s where repairing a rotator cuff can be [really] successful.” Also, tendons are stronger when we are younger. If this was a sudden injury or a chronic tear discovered in my 40s or even 50s, I’d be signing up for surgery right away.
A New Surgical Option?
While searching for more options, I started hearing from a handful of wheelchair users who had undergone a different surgical repair: a reverse total shoulder arthroplasty, also known as a reverse total shoulder replacement (see “Reverse Total Shoulder Replacement: The Promising New(ish) Shoulder Surgery for Wheelchair Users”). The FDA approved RTSA in 2003, but until recently it was almost unheard of in wheelchair users. Surgeons didn’t know how the prostheses and procedure would hold up to the extreme forces that are unavoidable for manual chair users.
Stampfli was one of two satisfied RTSA recipients I found. In June 2023, he opted for an RTSA after the rotator cuff repair on his right shoulder failed. “Compared with the tendon repair, the recovery from the total reverse shoulder was super-fast,” he said. “I was starting to work on transfers within a month after the surgery.” At age 65, Stampfli’s other shoulder was even worse off and in urgent need of repair. “I had such a bad experience when the tendon was repaired, and I’m so happy with the first total reverse, that I decided to have a total reverse on the other shoulder, although technically my doctor said I was a candidate for tendon repair,” he said. Both recipients said they had near-normal range of motion except when reaching backward, which was limited.
I got referrals to two orthopedists versed in RTSA and ended up with two almost-identical visits. Each doctor had seen my MRI and was surprised to examine me and find I still have full range of motion in both arms. Both doctors asked me to hold my arms out to the sides and in front to test for strength and see my pain level. When I told them that on a good day it’s minimal and on a bad day a few Advils knock it down to a tolerable level, each doctor had similar advice.
They were willing to do a rotator cuff repair, SCR or RTSA if I wanted, but since I still had good range of motion and strength, they cautioned that even under ideal conditions, with a perfect surgery and rehab, the best I could hope for would be maybe a 30% improvement. That’s in addition to the many possible downsides mentioned earlier in this article.
Adding all this up, although I have severe, chronic tendon damage in each shoulder, the chances for a retear following surgical repair are too high, and since I still have normal range of motion and relatively good shoulder strength, RTSA is likely my best surgical option.
But I’ve decided to hold off on that route for now. I plan to keep doing my PT exercises and stretching to keep my shoulders healthy as long as possible before getting a total reverse. I’ll be making all the preparations for eventual surgery — relearning to use a sliding board, budgeting for a roll-in shower, and searching for an affordable used ramp van, used power chair and transfer lift — but hoping I won’t need them.
When I asked about the right time to go with the total reverse, the reply was, “Hopefully it doesn’t get to that point, but when it does, either from lack of movement or constant shoulder pain, you will know.”
On the one hand, it’s disappointing to hear that surgery won’t be able to restore my shoulders to the strength of my youth. On the other hand, I’m glad I did the research to make the best choice for me. My decision gives me a reprieve from spending a year of rehab on each shoulder. One of them could fail at any time, but hopefully not for a long, long time.
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