Shoulder pain and replacement

[MikeRobison]

I am a T-5/6 para (7 + years; I'm 61) who has been experiencing worsening pain in both shoulders - enough to keep me awake at night. I had been getting periodic cortisone shots and they were very effective - until the most recent ones, which gave me little to no relief. So, I met with my orthopedic surgeon and he said I had osteoarthritis in both shoulders (though he said this without getting an MRI or X-ray, though I did have one 3 years ago) and that it would just get worse. My only options presented to me were "live with the pain and perhaps medication with neproxen" or get shoulder replacement. Right now, I'm on neproxen. It helps a little.

I would basically be bed bound for 6 weeks since transferring would be problematic.

Has anyone here gotten a shoulder replacement? If so, maybe you could message me with the details.

This seems totally unfair. We have to go through all of the daily issues, including (for me) an always present band of pain at the break line. And now this!

Thanks in advance.

[pete4sake]

I faced this diagnosis and dilemma several years ago once with each shoulder surgery was recommended I went on an ice / heat and naproxen to get through the worst pain then began preventing stretches and exercises and massage It has been 15 years since I was told I needed surgery and I am doing ok at age 63 . 35 years post .. Try to look at everything you do in a day and come up with ways to be nice to your shoulders 1 1/2 years ago I began using power chair took several months to get used to it now have more independence and freedom than ever still have to do the stretch and exercises for preventative maintenance I use a program called STOMPS if you want more info I can add some later

[funklab]

I’m interested in what this STOMPS program is.

[JoeMonte]

Hello Mike,
if you live close to New Jersey, I would highly recommend the Lipogem injection trial. Dr. Trevor Dyson and Dr. Malanga are heading it. It changed my life 100% for my right shoulder. I am a T-10 complete 58 years old. I even wheeled my first race this year 13 years post. Take a look , I know it’s a game changer vs. surgery. Wish you well.

[MikeRobison]

Do you have any more specifics on the trial?

[JoeMonte]

Go to clinical trial.gov and enter identifier # NCT03167138. They are currently not recruiting due to the Covid-19 . Read it and you will find it’s very interesting. Google Lipogems injections to and look at New Jersey sports medicine Dr. Gerald Milanga. A wealth of information. Wish you well.

[hlh]

My Dad is a 77 year old para (13 years post) and has severe arthritis in one shoulder now. It used to wake him up at night. The steroid injections only gave him brief relief. He hasn't moved on to the next step of injections they offer, although the doctors admit there is no data showing they will work (hyaluronic acid, protein rich plasma, other stem cell options). Instead my father has been doing PT/OT for his shoulder, and it actually helps a lot. He needs to do his exercises/stretches every day, or he really can tell the difference. He doesn't have both shoulders affected though, and he is still able to transfer ok. He also walks some with crutches and he doesn't have pain with this.

I would definitely recommend an intensive PT or OT for your shoulders, and keep up those exercises religiously. You could also try topical NSAID creams, topical lidocaine patches to help with sleep. And make sure the PT or OT review with you the best ways to sleep to try to keep your shoulder pain from waking you up at night. My Dad has to sleep with his arms in the "right" position, or he will wake up with pain. So we use an assortment of pillows to help with this. He sometimes wears a shoulder brace for a brief period during the day to help cue him to keep his shoulders back, in a good anatomical position.

His physiatrist, who is an expert in SCI, strongly encouraged him to try everything before considering surgery. I think 6 weeks in bed would be optimistic, and it could be much longer, as you gradually ease into using your shoulders again.

[MikeRobison]

Thanks for the comments! They were helpful. I'm hesitant to do the shoulder replacement, as hth says, it will likely take more than 6 weeks in bed. Plus, even in bed, I would still have to do bladder and bowel programs, the latter would require me to roll - using my shoulders.

Anyone out there that has gone through the replacement?

[Patrick Madsen]

The six weeks is just inpatient at an assisted living facility. Then months of rehab after. I was told by my surgeon that once I'm cut there's very few other choices after. I could fall over on the shoulder 4 mos. later and rip out everything he did. The many cortisone shots did more damage in the end. Back in the day, shoulders weren't that much of a concern because we sci's didn't live long enough to experience the results.

I gave myself 6mos. to make the decision. In the meantime, I found a good masseuse, chiropractor and a trainer who thought outside the box. I got a great price from all of them because they wanted to see how far I could get before needing it done. I quit the hardline w/c sports competitions but kept up with handcycling and 22 years later still ride, see the trainer in a gym and masseuse on a weekly basis with chiro. as needed. The shoulders are pretty shot but I'm 47 years post injury and still active.

For myself, I've found as long as i keep exercising and moving them with proper form and function, they do better.

A friend of mine had the reverse shoulder surgery about 6 years ago and says it's doing okay. Also spoke a lady who went to Costa Rico or Guatemala for stem cell shots that made a big difference in her shoulders.

In my years mentoring others etc., it seems those who don't do any exercise or work to keep them strong end up with shoulder problems quicker than those of us do. I'm basically using light weights now and the rubber cords of various strengths to work the minute shoulder muscle groups.

I really feel for you Mike, it's a tough without a doubt. For myself I'd try other alternatives before surgery. Once you're cut, you're cut. Osteo is common for we sci's as we age.

[pete4sake]

I’m interested in what this STOMPS program is.

You can google it one site that explains it and gives you exercises is SCI Washington.org i stomps stands for
STengtheningOptimalMovementsPainfulShoulders

lot of internal external rotations lateral arm movements etc
my physiatrist recommended because it has research behind it it stresses resting shoulders and working on good form not heavy weights

[funklab]

Thanks, I'd tried googling it, but googling "STOMPS" without knowing what it stood for didn't yield any relevant results.

Looks like pretty good stuff. Out of curiosity do you have a sense of roughly how long it takes you to do all of the exercises?

[hlh]

STOMPS - Most of these overlap with what my Dad has been doing too.

http://sci.washington.edu/spasticity...20part%201.pdf

[pete4sake]

Yes the exercises are pretty common but doing them exactly as instructed think form sets include rest periods was very different for me in how I did those same exercises before it does take some time ...

[triumph]

I'm in my 70's and lifelong paralyzed. Shoulders began going to pot about 10 years ago, years after retiring from road racing. It was years of crazy transfers that probably got me. I highly recommend looking into Physical Therapy for a customized routine of exercises. In addition there are online sources showing people in chairs doing exercises for the shoulders. To this day I do a short session about 4 times a week - it's only 15 to 30 minutes as any more tends to produce pain the next day. One thing that's been working for me in my session is to include shoulder hunches - upward, forward, backward.
Best of luck to you.

[MikeRobison]

Going to see the orthopedic surgeon tomorrow. Really reluctant to do the shoulder replacement thing. Too many things can go wrong, not including the ever looming autonomic disreflexia. The Physician's Assistant that has been doing my cortisone shots said that the surgeon might be able to go in orthoscopically and "clean up" and perhaps give me some relief that way. And I would only be laid up for a couple of days. Leaning that way.

By the way, the arthritis has gotten into my muscles now. Almost all the muscles/tendons/ligaments seem to ache now. Has anyone had this issue too?

I have increased my pt, but it seems that it makes it worse at times.

[August West]

I am a T-5/6 para (7 + years; I'm 61) who has been experiencing worsening pain in both shoulders - enough to keep me awake at night. I had been getting periodic cortisone shots and they were very effective - until the most recent ones, which gave me little to no relief. So, I met with my orthopedic surgeon and he said I had osteoarthritis in both shoulders (though he said this without getting an MRI or X-ray, though I did have one 3 years ago) and that it would just get worse. My only options presented to me were "live with the pain and perhaps medication with neproxen" or get shoulder replacement. Right now, I'm on neproxen. It helps a little.

I would basically be bed bound for 6 weeks since transferring would be problematic.

Has anyone here gotten a shoulder replacement? If so, maybe you could message me with the details.

This seems totally unfair. We have to go through all of the daily issues, including (for me) an always present band of pain at the break line. And now this!

Thanks in advance.

I have the same diagnosis plus frozen shoulder and tears. They also said a replacement was the only option. But one doctor was also forthright enough to add that I probably wouldn't be happy with it. Since then I've gotten a lighter chair, a van, and a smart drive to take the load off my shoulders. They are much better with less pain and more strength and range. That's without NSAIDs or cortisone shots. The problem with driving a car is that the transfer (you and the chair) is very hard on the shoulders, especially when you have a rigid back and heavy wheels. That's all pounds of extra weight. When it's hanging off your extended arm like a lever 1 extra pound feels like 10. That prevents a shoulder injury from healing. The van has eliminated that problem.

I guess I will always have bone on bone in my shoulder. But what matters is function, which I have regained. The clinical diagnosis is terrible. But I have decent function and little pain so I am happy.

[spinner]

Being a gimp for almost 70 years I have noticed that orthopedic surgeons seem to find surgery to be the solution. A physical therapist seems to find exercise to be. I've found it better to try therapy first.

[SCI-Nurse]

Being a gimp for almost 70 years I have noticed that orthopedic surgeons seem to find surgery to be the solution. A physical therapist seems to find exercise to be. I've found it better to try therapy first.

"If you are a hammer, everything looks like a nail"!!!

(KLD)