Rotator Cuff Repair One of the more awful experiences of my life

shoq

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Hello everyone, a friend on Twitter just put me on to this site. Sure wish I looked for it a month ago. I went in for what they assumed was a fairly routine repair. But once he got inside, a bone spur had sawn through my bicep to the point where they had to just chop about an inch and a half of it off. That was in addition to fixing a very big tear in the “whatever you call it tendon “ across the shoulder blade. 3 hours and 9 cadaver screws later, and they said I was going to be as good as new. Or would be after 6 to 9 months of physical therapy, anyway.

So here I am, in a recliner talking to you and about to recount what an absolutely miserable experience I've had, with the hope that my experience can give the next person a clue that I never got, which might prepare them for what's coming. This has been so bad, and so painful, I have actually fantasized about going back and skipping the surgery altogether and opting to just live with what sure felt like pretty terrible pain at the time. I'm no stranger to pain, and I have a pretty high threshold for the stuff. I've suffered from cluster headache, ruptured discs, broken kneecaps, and strep D pelvic infections, all of which are pretty well-known in the pantheon of serious pain experiences. But they were not persistent over time, as this recovery has been. And that persistence made this truly a thing from hell

My first week was horrific. After the nerve block wore off, pain was so intense I was in tears most of the time. Sleeping was virtually impossible. I had not been prepped with all the tricks that the doctor should have told me about. Even pointing to this site would have been helpful. And many of the tricks themselves aren't even all that effective. They're just better than nothing and worth trying in the absence of anything else. Take for example the recliner advice. Recliners are not really designed for sleeping, and while they may put less straight stress on the shoulder for a time, it is at the expense of the butt and rest of the body that get starved for blood flow over many hours in one position. I had two different recliners and a reclining office chair in service at any one time, and sometimes I had to use all three to get a couple hours of sleep. And that was after double doses of oxycodone, 500 mg of Tylenol, and 10 mg of Ambien sleep med.

I may not be typical of course, but I just found it so difficult to get the shoulder in a position where it was not painful enough to keep me up enough to keep me awake, that I literally spent weeks tinkering with the solutions in the middle of the night trying to find something that would work at least well enough to let me get a decent night's sleep once or twice a week. The best solution so far was the simplest. Put a piece of plywood against your headboard set at a 60° angle, and stack two rows of regular bed pillows on it. Not 45 degrees. 60. If the angle is too slight, the shoulder sinks in such a way that three or four different muscles are affected and it can be straight up agony. At sixty, they seem to all the line in the same direction and if you support the elbow with a small pillow, and you can find a stasis that's relatively comfortable. It's not easy. You also need a pillow under your knees to prevent you from sliding down while you sleep. Get all of this together in advance before your surgery. Because you will hate yourself if you don't. Doing the simplest things without one of your shoulders, even without the pain issue, is just incredibly difficult. With the pain issue, it's coping with daily tasks is exasperating and exhausting I'm saying this as an inventor and problem solver, who has a lot of tricks most people don't have for figuring out how to do stuff in novel ways. Without my skills at seeking solutions, I would have been on the edge of despair most of the time. Hell, I mostly am now.

Forget about doing this alone. I was a caregiver for my 94 year old mother. So I basically was alone. She tries, but there isn't a lot she can do to help me. But in a pinch, I'm sure glad she's there it even it's just to spread some cream cheese on a bagel. If your surgery is going to be on your dominant arm, start practicing now. After 3 weeks I finally learned how to shave with my left hand. I've actually gotten kind of good at it. But that's about all I'm good at. Writing is almost out of the question, using a mouse left handed that is miserable, and without voice dictation software, I wouldn't even be typing this to you now. Even with it, it's a lot of work

But you can learn to cope with all the inconveniences over time. The biggest issue for me is the continuing pain. Extreme levels of it. I'm now a 3.5 weeks in, and both my doctor and my physical therapist tell me that I should be outside of that extreme pain envelope by now. But I'm not. Just dictating my words to you right now radiates to my shoulder and it's quite painful. When I go in for PT three times a week, they can hear me screaming five floors up. And it's getting worse, not better. It's just the most excruciating agony as they try to increase my range of motion, which now seems to be decreasing. When I try to do PT at home oh, my nights are the worst ever, even limiting myself to just a few gentle stretches. They insist nothing is wrong, that it's just a bump in the road, yada yada, but I'm starting to wonder. If you've had this level of pain after three and a half weeks, I'd love to hear from you, just because it will give me hope that this situation isn't that unusual and I just have to wait it out.

One piece of advice you must heed. It takes a lot of research to discover this. The pain med of choice for this is oxycodone; an opioid. Trust me on this, ordinary laxatives are useless against opioid-based constipation. Don't even bother with them. All the old rules about fiber, water, blah blah blah or meaningless. Oxy rewires the lining of your colon. The only laxative that helps, and it helps a lot is a sennosides-based laxative. aka, senna-kot. Any of the over-the-counter generic versions are just as good. But this is the only type that works. Full stop. Again it took me a lot of Internet research to find that secret sauce. I wish someone would have shared the knowledge more widely. The surgical pain is one kind of unbearable, and mostly unpreventable. The constipation misery, however, can be prevented. So prevent it. Take this advice seriously. It will be a big issue.

In my next post I will try to be more helpful and less alarming. I just wanted to make it clear that you must prepare for what's coming. 6-8 weeks in a sling without one of your limbs (especially the dominant one) is a challenge you are not prepared for. There should be much better tutorials for this surgery and follow up, which the medical establishment should produce as open source content. Millions would benefit (there are over 550,000 rotator cuff repairs in the US alone each year).

Good luck to us all. Any pain management advice anyone wants to offer me, I feel I'll be in the market for it for at least another couple of weeks. Thanks to the operators of this site. I wish more doctors knew about it.
 
@shoq
Welcome to BoneSmart, :welome:
Sorry to hear of the rough ride you have had since your extensive shoulder surgery.
I am going to take @SaraK to come and talk to you, she has had shoulder surgeries.

For pain management
Ask you surgeon about adding Tylenol to your opioid pain medication if your pain med does not have Tylenol included.
Assume you are icing and elevating?

In bed, placing a folded over hand towel, about 3/4" height under your elbow, may help align your arm and shoulder in a more neutral position. Hopefully to reduce the stress on your shoulder.

Keep us posted on how you are doing,
Chris
 
@shoq Welcome to BoneSmart :welome: I am so sorry you are having such a horrid time with this rotator cuff repair! You did not mention it but are you using ice on the shoulder? That can help a lot with both pain and swelling. Frozen gel packs ( the flexible kind) worked best for me when I had each shoulder joint replaced.

Also what you said about PT ... "When I go in for PT three times a week, they can hear me screaming five floors up. And it's getting worse, not better." If I were you I'd fire those PT folks cuz they are NOT doing right by you! You are still healing and should NOT be being put through that kind of extreme ROM exercises yet. Heal first, strengthen/train later. When I had my shoulders done PT did not even start (except for some very gentle swing the arm exercises) until 6 weeks aft the surgery. Especially since you said things are getting worse pain wise and ROM wise ... this is not the way to recuperate from any kind of shoulder surgery - especially given what you said about how much needed to be done to repair the damage to your shoulder.

I sincerely hope things get better for you quickly! And you did a great job dictating this post :) Thanks for the paragraphs!!!
 
@shoq - :welome:

Welcome to Bone Smart! I'm glad your found us! If you give us your surgery date and confirm which shoulder it was, we'll create a signature for you.

I'm sorry you're having such a rough time of it. What type of sling do you have? Is it a standard sling or is it one of the "bolster slings" like this? The pillow/bolster and the immobilization straps really do make quite a difference. Getting the sling positioned right (height, degree of rotation, etc.) made a world of difference on the pain level. When it was positioned correctly, I could relax into it and have less pain since I wasn't putting any stress on any of the muscles or tendons. It also made a difference in sleeping in the recliner.

1645570624954.png

I also had a massive tear of the supraspinatus, an almost complete rupture of the bicep tendon (which he completely released and a minor tear of another rotator cuff tendon (all on dominant side). I didn't have the bone spur and don't know how that impacts the pain level but the surgeon did shave the underneath of the collar bone to make more room for the tendon. You are right - surgeons do not prepare you for the reality of post op. Luckily, I was able to get information on this site to be able to prep before surgery. My son was supposed to help me during the first week after surgery while he was on spring break. During that week, everything shut down for COVID and I was grateful to have his help much longer than expected.

You might consider an undercounter jar opener and a battery operated hands-free can opener. They were godsends to me and gave me greater autonomy.

You said they cut an inch and a half off the bicep tendon - do you mean they shortened it that much? or reattached it at a lower point? The surgeon completely released mine (I now refer to the muscle as a unicep). I have a friend that had a torn bicep and had so much pain after they "fixed" it that he had to have them go in and release it. Recovery was smooth after that.

Different surgeons have different protocols. Mine required me to use the sling 24/7 (except when bathing) during the first 6 weeks and didn't have me start PT until that the 6 week mark (he wanted the rotator cuff tendon to "knit" as much as possible while it was in the most relaxed state before starting to stretch it. I know there's a concern about loss of mobility if you don't do PT with a shoulder repair, but waiting until the 6-week mark didn't cause any problems for me. You might ask your doctor about waiting a few more weeks to continue PT. My PT (which only lasted about 2-1/2 months) wasn't always painless but it was generally the "stretchy" sort of pain. I'd be concerned about PT that is as painful as you indicate. If you continue PT, ask the PT to use heat before any exercises or stretching, ice afterwards and consider using a TENS machine.

Another contraption you might consider (but don't use it until the surgeon and/or PT say it's ok) is a shoulder pulley. It's available for about $15 and allows you to do some loosening, stretching, etc. on your own without activating the muscles in the surgical arm.

Please keep us up to date. I hope things start improving soon!
 
@shoq
Please post your surgery date, a moderator will add it to your signature for you. Having the exact date will help us properly advise you. Thanks!
 
Thank you for all the replies. My surgery was January 28th. I've had others tell me that the PT should be more gentle but both the surgeon and other sites of said that they have to get the range of motion up early on or the shoulder can set that way, causing much bigger problems Downstream . I'm not sure what to believe. It certainly feels like the pain is so severe and getting worse that I can't quite believe it's expected to be this way. Again I have a pretty high pain threshold. But anyone listening in on this would assume I was being tortured. I mean it's breathless, writhing agony the last two sessions . And yet, this is a very well-established PT unit at a very respected Hospital. And I absolutely adore my therapist and trust her. But of course that trust could be misplaced. But there are at least six other therapists in the gym with her, and they've known me for several years. It's just hard to believe they're being reckless or incompetent. She seems to feel I just have to work through it. And the surgeon had been insistent that I get into PT before I even saw him for follow up. Which I did And I've read other surgeons on the web who also insist on that early PT regimen . So again I just don't know who to believe but I guess I'll just keep asking questions and talking and hope some clarity emerges.

Sarah, I do use a TENS unit. All the time in fact. The only relief I get. I've gotten pretty good at knowing where to set the pads for particular kinds of pain. Good idea about the towel though. I did have that problem last night getting that microadjustment what's the towel should be perfect at providing with a few Folds. Simple solution.

PostScript. I am indeed using the sling with the bolster. The surgeon wants me to use it for at least another week. It's really awkward and uncomfortable but it does keep the arm in a more restricted range of motions and it would be in an ordinary sling. But it's really a bear to wrestle with at night in bed, or with recliners where it clashes with the arm of the recliner. It's all trial and error as most of you know. I spent night after night tossing and turning and tweaking different solutions to try to he got another hour of comfortable sleep. Just when I think I've got it figured out one night, a whole new set of problems pops up the next night. I'm dreading that right now. As soon as I finish this post I'm heading off to bed, deeply fearful of what tonight will bring. Just a full-time job keeping up with all these pain points and remedy parameters.


, and I also use a shower sling. That's just a cheap Sling from Walmart let you use for showering when you don't want to muck up the big bolster sling
 
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On the subject of tens units, I've used these for many years for different body parts. One big challenge is finding a quality provider of electrode pads. Most of them are terrible, but I think I finally found the perfect pad from my therapist. They're probably pretty expensive, but they outlast all the other pads I have about 10 to 1, so they may pay for themselves . And they're very comfortable and almost never give off gel burn.

Here's the metadata:
Valutrode X model VTX2020 , by Axelgaard. But they make up a zillion different models and these have a "foam" top that is unlike anything I've used before . I'll let you know the price tomorrow when I know it/

ps
I use these for about 2 days, then moisten them slightly with a little bit of distilled water and set them aside to dry for a day. I've recycled them at least 12 times already. Most pads are dead after three or four uses.
 
Hello. So my therapist talked to my surgeon. He doesn't seem overly concerned, but he's agreed to give me a muscle relaxant, to see if that helps get me through therapy. I'll post an update when I have one.
 
I hope that gives you some relief! If not, just remember that you have the right to decide whether to continue on this course or pull back for a couple of weeks. My PT didn't start until the 6 week point and I have full ROM and function so there's no hard and fast rule that PT has to start this early. Consider filming a PT session to show your surgeon. Sometimes seeing is believing!
 
Hi and Welcome to Bonesmart!

I’m so sorry you have had so much pain, and have had such an aggressive rehab. I have learned in my years here at Bonesmart that not all physical therapy is created equal. We go to PT trusting that they know best what we should do, but that is not always the case. I have also learned that while surgeons are very good at surgery, they don’t always recommend the best rehab options.

I had some very bad PT experiences with my partial knee replacement, which is what made me find Bonesmart. Bonesmart gave me the informed knowledge to say no to certain things at PT.

Keep in mind, this is your shoulder, not your surgeon’s, or your PT’s.

People are all different, as are the approaches to this recovery and rehab. The key is, “Find what works for you.“ Your doctors, PTs and BoneSmart are available to help, but you are the final judge as to the recovery approach you choose.
Saying no to therapy - am I allowed to?
 
I recently (Dec 29th) had total shoulder replacement and my surgeon and a physical therapist I know have said PT should NEVER hurt, if it is hurting STOP. My particular surgeon does not believe inPT and has given me his own excercises that he wants me to do and in what time frame. I started the day after surgery just letting my arm hang at my side and progresses to doing little circles. I then went to the pulley and am now using 1pd weights to lift my arm (I am still unable to lift my arm against gravity, I can only raise my arm if I am using pulley or bent at the waist. I am so sorry you are in such pain, I am not a doctor. It I would think that type of pain would be over……maybe a second opinion? Like the,previous poster said, it is YOUR body and you know what is normal for you.
 
My wounds


My latest bed set up.
Two critical factors are the 60 degree slant board (not a wedge), the little plank on the right side, that is slightly elevated in the back, to support the sling bolster. Without this simple crutch, agony. The tablet swing arm makes life a lot easier to. Under thirty bucks on Amazon. Note: if the plank is too high it won't work, and too low it won't work. But once you find The Sweet Spot, it works pretty consistently. To the extent anything works at all for my condition

shoulder-bed.jpg
 
I hear everyone about second opinions, but second opinions are not easy to come by these days. It would take me six weeks just to get an appointment with another surgeon, so I'd have to just get an opinion of another PT specialist. Both my surgeon and the rehab center are pretty well regarded. He's a leading Sports orthopedic surgeon here in South Florida, and the Rehab Clinic is part of the largest hospital complex Florida. It's hard to believe they wouldn't have a range of experience between them, but I get that anything's possible. Now if I can just figure out how to get referrals in time to be meaningful
 
Therapy was much more gentle today. As for doing the home pendulum swings and that sort of thing, I do those once a day as gently as possible anyway , and have the same agony that same night as I get from PT. I guess I'm just cursed
 
You are not cursed, you just had a major surgery that caused a lot of upset and trauma to the surgical area, plus, the PT you are doing is further upsetting the area, so even gentle things at this point are going to be painful, which could hinder healing.

I doubt you could get a second opinion with a surgeon this early in recovery, and you probably don’t need that yet anyway. However, you could call some other PT places and ask them how they rehab after the surgery you had.

Just because a PT facility is well regarded (by who, and what procedure did they rehab there?) doesn’t mean it is the right one for your body.
 
You might also ask your PT and any other PT you consult what percentage of rotator cuff repair patients they see before 6 weeks and if they see any difference in outcome.

Are you feeling pain all over or just in a particular spot? Do different movements cause pain in one spot or another or pain in different degrees of OMG?
 
For me, the reduction in pain came when the tendon and anchor finally attached to the bone--4+weeks? I didn't have screws, but a friend did and her md told her the screws take even longer to settle in.
And mine was sensitive to weather changes for the full 2 years that my os told me to expect. So perhaps a warm Florida spring will give you some relief, as well.
Best wishes. We all empathize.
 
WOW the replies the pain the types of pain meds the way to sleep the phisio recovery using the non dominant arm , laxatives , I applaud you all for taking time to give advice to those waiting on surgery ( ME ) and others . After reading ALL the comments I might change my mind about having shoulder replacement surgery and just put up with my restricted movement and manageable pain I have now , at least I can use my dominant arm and hand for doing every day stuff ( that’s the one the surgeons want to replace ) second thoughts now . Or lots of preparation ICE , STRONG pain killers , get More pillows , get plywood for my bed , practice sleeping in an upright position , most importantly get my wife to practice brushing my hair teeth putting my clothes on feeding me I’ll have to get a bell so I can summons her when I need food drink medicine. Only joking but she has said she would help because she loves me ❤️❤️ . Dictation for her too or hours trying to type with my non dominant hand that’s going to be awkward. I did read on a forum about washing under the arm of the shoulder that has had the surgery is SO IMPORTANT or you’ll start to smell .
I really like this forum because you guys tell it like it is . Chat soon when I get the date for my op , mmmmm decision’s
 

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