Partial and Full Shoulder Joint Replacement - my story and tips

I thought I would post about my experience with hopes it will help someone else.

I was in a motorcycle wreck in 1977 and shattered my shoulder. It damaged a lot of soft tissue because of the bone shards and also healed incorrectly. I developed arthritis and also avascular necrosis which is where parts of the bone don't get adequate blood supply so it dies, gets brittle and breaks apart, deforming the bone and leaving debris floating in the joint. The cause of the AV was damage to blood vessels from the accident.

By the 1990s I was having lots of trouble with my shoulder, both pain in the joint and persistent muscle spasms. I tried a lot of things but a hot tub helped the most and kept me functioning. In 1996, I had laser surgery to clean things up and that helped for a while.

In 2004, at age 45, I had the partial replacement where they put a cap on the ball part of the shoulder. My bone was in really bad shape, deformed to the point that my surgeon said it wasn't recognizable as a shoulder anymore - "a square peg in a round hole". The cap was to give me some more time before I would have to have full joint replacement.

I'll say here that I read at that time that the choice of surgeon was the most critical key to a successful surgery. Docs who do a lot of replacements get better outcomes, shorter hospital stays and fewer complications. So I got the best I could and saw Dr. John Brems who heads the Shoulder Orthopedic group at the Cleveland Clinic and does over 400 replacements a year. He has been doing them since the 1980s so the guy can practically do them in his sleep. He also has a sweet setup with an office next door to a hospital that specializes in orthopedic surgery. All of the patients on my floor were joint replacement patients and the nurses and other personnel are trained specifically for those situations. Cleveland is 6 hours from my home but it is well worth it to get that level of care for something so important to my quality of life.

The partial went well and I recovered relatively quickly (it still took a year). However, I was still badly affected by the soft tissue damage and was restricted in my use of the arm because of that - raise arm no higher than shoulder, lift no more than 10 lbs., keep repetitive motion to a minimum, etc.

Slowly, the pain came back in my shoulder and eventually got really bad. My docs at home didn't think it was a surgical situation and I tried everything for it but nothing worked for long - meds, shots, pt, etc. I spent a year at those things before I finally went back to the surgeon. He told me the xrays showed I had no cartilage left so it was metal on bone and time for the full replacement.

THIS IS IMPORTANT: In some people but not all, the metal cap causes quicker degeneration of the remaining cartilage and bone than would happen without it. If you have the cap done, be sure to be checked every couple of years to see how things are going.

I had the full replacement done on Jan. 18. 2012. Things were a lot worse than the xrays showed. The bone on the socket side was worn down to the point that there was barely enough bone to attach the prosthesis even though he used the smallest one they make. If I had waited even just a couple of more months, there would not have been enough bone and I would have had to have a series of bone graft surgeries before the joint was replaced - can you imagine? I am so grateful. Even so, it means that if I need a revision, I will have to go through that because removing the current prosthesis will destroy what little bone is left. I am only 53 so my use of the arm will be restricted to make the joint last as long as possible and many activities will be eliminated because of risk of injury. I simply can't afford even a minor injury. As the doc put it, there are no do-overs or fixes at this point. He said that my shoulder was one of the worst he has ever seen and also one of the most difficult surgeries he has ever done. He had trouble on the ball side too because the bone was so small and the scar tissue and other soft tissue damage was so bad that he had trouble distinguishing the different tissues and structures during the surgery. Really, it is amazing that my arm works at all and I believe a lot of it is because I have a top surgeon taking care of me.

Even with all of that, my recovery has gone extremely well. There was very little bruising, drainage or swelling. I was released after 2 days in the hospital and sent home with a Q-on Nerve block pump which was wonderful for pain control and for physical therapy.

As with the earlier surgery, I was told not to wear my sling except when out in public when I need it to shout to people not to bump me or touch my shoulder. My physical therapy is my husband moving my arm for me in 2 types of movement morning and night plus me doing the passive pendulum movement. I was told to take my meds and put a heating pad on 1/2 hour before doing the pt and have followed those instructions (and all others) to the letter. Since getting my stitches and staples out, I have been getting in the hot tub before pt because that warms the muscles even more. I will not see a professional physical therapist during this recovery and didn't during the last. My doc will give us the instructions and we will follow them, simple as that.

Here are some of my tips:

I wear elastic waist pants and zip-up light-weight hoodies every day with a fasten in front, no wire, "sleeping" bra which has never been a problem. I bought a cheap pair of tennis shoes at Walmart that has velcro closures so that I can manage them easily.

We put a folded blanket and pillow on our dining room table and that is where we do my pt. My husband has bad knees and by using the table, he can do the exercises without stressing his body. I have a stretchy cheap turban from the beauty supply store that I can pull over my head and then stuff my hair into it so that I can get in the hot tub or bath tub while keeping my hair dry. I tried other things but the turban was the only thing that let me manage my hair on my own.

I sleep in a recliner on my back but with my weight shifted onto the hip on the opposite side of the surgical shoulder. This puts the weight of my upper body to that side so that my surgical shoulder isn't pushed back against the recliner. I lay a rather flat but wide (queen size?) bed pillow across my lap and put my arm on it, then pull it up so that it is across my chest as I lay back and my arm is draped over it in a bent position. This keeps my arm forward across my body so that it can't fall back to where the elbow is further back that the front of my body which would cause a lot of problems. I use a squishy little pillow for my head and manage to sleep pretty well.

I take my meds around the clock, setting an alarm so that I won't forget. It is a lot easier to keep the pain under control than to get it under control in the first place.

I stocked up on microwaveable meals and other foods that I can manage with one arm. I was encouraged to use the surgical arm as long as I kept my elbow against my body and didn't lift any weight or push or pull things and now, 3 weeks after surgery, I can reach out far enough to wash my hands normally and am now typing with the keyboard on my lap. I am careful not to hurt myself but do use the arm as I can.

I sleep a lot, read, mess around on the internet, etc. so life is pretty boring. The pain gets bad at times but is mostly well managed. I get frustrated and/or down at times but not for long. I knew it would be like this because it takes 6 weeks just for the tissues to heal before you can even begin to get any strength back. Recovery, at least for the first 6 weeks, is mostly a waiting game. It seems like you aren't doing much but your body is hard at work healing itself.

That is all that I can think of right now except to say that rehab is the key to recovery and a good outcome as far as function is concerned. You have to do the rehab as instructed, devotedly, but it will be worth every minute.

I hope this helps someone. If you have questions, I will do my best to answer them.

Margie

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17 replies. Join the discussion

Thanks Margie for sharing your story! So sorry to hear all you've been through. You have an incredible attitude though and a lot of insight and wisdom! I hope I do not ever need joint replacement, but I suspect it is likely at some point. I found your post very informative and insightful!
I hope your healing continues to go well.
God bless you!
Molly

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Thanks Marge for your post. How is your recovery doing? I had my total shoulder recovery Feb 28 and like you, I am finding the 6 week recovery stage long. At 3 weeks I am glad to say goodbye to my sling. I got the okay to drive but my husband is resistant.
Are you doing just assisted range of motion Are you using the pulley? I just finished 5 months physical therapy for the same shoulder post fracture and expect the same type of exercises. Do you recognize the exercises from your partial shoulder joint replacement. Is it easier this time around? I have little to no pain in my operative shoulder but my other shoulder is in bad shape and will be looked at next visit. My other shoulder pain will probably increase as I have to use it for the recovery of surgical arm. I try to walk everyday about 1-2 miles to keep up my endurance. I am overweight.
how do you manage the worry about final outcome. I pray a lot but my shoulder got worse as time went on to being disabled feeling, not able to work and in pain no matter how hard I tried. I am fearful it will happen again. I too did my research and my doctor did 72 shoulder replacements last year and the hospital was totally orthopedic, only 90 minutes away. The Hughston clinic in Columbus GA. I am so glad I got a second opinion when I did before more damage was done. i had no pain 6 month prior to shoulder replacement but the fall and fracture really changed my life. I have tried sleeping in recliner but it bothers my back. I take great naps during the day but night is a problem. I do my pendulums, elbow bends, hand and wrist range of motion without fail and my husband moves my arm passive to 90 degrees 5 x a day. i love the kiss before and after and staring into his eyes during the exercise. I try to make it romantic. We've been married 37 years, he got laid off in Oct and we really enjoy being with each other. I want to visit my son in DC in a couple of weeks before increasing my shoulder exercises in case it sets off my other shoulder Do you think airline travel to adventurous?

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Hi Rhonda,

Tomorrow will be 9 weeks for me and my recovery is going well except for pain issues. The doc was thrilled with my range of motion and showed me that I'm already forming bone in the slots of the socket side that will integrate it into the bone. I am still having a lot of pain, though, and still taking the narcotics whereas I was off the narcotics by week 5 when I had the partial done. The doc said that he had to do a whole lot more to my shoulder this time and my soft tissues have also degenerated more since then. It is going to be a long, slow recovery.

I do worry about the outcome. After my partial, I did great for 10 months and then began having really severe, totally uncontrollable muscle spasms. That worsened to the point that I had to quit working completely and spent the next 2 years going from doctor to doctor while doped up on muscle relaxers and narcotics. Eventually it did improve some but I have not had anything close to normal range of motion or use of my shoulder since 2003. My biggest challenge is to get my strength back without setting off that kind of uncontrollable muscle spasms. I have had spasm problems since the late 80s and have a variety of things I do to keep them under control so I am not helpless, but I sure don't want to go through the sort of hell I did for those 2 years. I just try to stay positive and when I start thinking negatively, I remind myself that there is no way I can know what the outcome will be until I get there and there is nothing that I can do about it other than what I am doing - rehab, etc.

I loved hearing about your romantic pt because that is what it has been like for us although we have only been married for 8 years. We were doing the pendulum and 2 passive movements twice a day and it was really nice. I'm doing 3 active exercises now with one stretch. I didn't wear a sling at all after I was released from the hospital and will not go to a pt unless my recovery doesn't go as expected. I didn't do any pulley exercises with the first replacement and I don't think I will do any this time either. I guess our docs have different exercise plans.

BE CAREFUL ABOUT DRIVING! My doc told me that I could drive but that I needed to be very careful not to close the car door with my bad arm. He said I could badly injure myself and set my recovery way back.

I am sorry that you have problems with your other shoulder too. I have some muscle spasms in my right shoulder but no joint pain and I have excellent function in that shoulder.

I think the trip to DC would be doable assuming your doc approves. I would wear a sling so that people will know you are injured and be more careful about bumping you, and I would ask to be boarded either in the first group or at the last to avoid being pushed around. It sounds like you are doing great from an energy level perspective so I would think you would be able to manage the trip. And I'm sure seeing your son would be good for you! Mine live close by and I get to see them often which always makes me feel better!

I sure hope everything goes well for you!

Margie

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Hi Rhonda and Margie, I belong to the shoulder club too. My total shoulder is 2 1/2 years old and functioning beautifully. The biggest test for me was whether or not I could continue to play tennis and i'm happy to report that I do 4-5 x's a week with no problems. I must say that I am amazed that you will not be having formal PT Margie. No matter how much stretching you do at home you can never stretch as much as a therapist would stretch you. No pullys????almost unheard of in shoulder rehab.!Don't get me wrong, you can heal very well with no PT but you will not reach your optimal outcome.PT was painful and I too was on pain medication for months but eventually it does stop hurting and life becomes good again. You must stretch everyday for a very long time, dare i say forever???This surgery . like all joint replacement surgery , is nothing short of miraculous but you have to do your part post-operatively to get the most from what uyour surgeon has started. Good luck to both of you.Og yes, if you have any questions about total hip replacements, well, I have 2 of those also!!

Barbara

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Hi Barbara,

I have read some of your other posts about your shoulder and your tennis. I am very glad for you that your replacement has worked out so well.

My doc just has a different approach than yours. I was in an arm immobilizer the day of surgery but it was loosened the day after and removed the next day. I did not wear a sling at all after that except as a "caution sign" while out in public and my husband did passive movements of my arm for me for the first 8 weeks. By week 3, I could reach out to wash my hands normally, type with my keyboard on my lap and use my surgical arm with my elbow close to my body. I will be given plenty of exercises that will get me back in shape. It is the same regimen that I went through in 2004 after partial replacement except with a few refinements. I have done formal PT many times since the first time in 1977 when I broke my shoulder and I know that it is not necessary for my rehab if I follow my doctors instructions. He will only send me to formal pt if I do not recover as expected.

I will not reach your optimal outcome in any case. My soft tissues are extremely damaged from the accident and the 35 years of deterioration since then. I have had problems with serious muscle spasms in my shoulder since the late 1980s and have lots of experience in dealing with them, but they are a daily phenomenon and a constant struggle. Also, given that there was barely enough bone for my doc to install the smallest prosthesis made on both sides of the joint, I do not have the luxury that you do of putting my shoulder under that kind of stress. I can not have a revision without multiple bone graft surgeries with long recoveries in between with no joint at all, and even that may not be possible, and being only 53 years old, it is critical that I make my joint last as long as possible.

The plastic socket can wear out pretty quickly under heavy use. When I was at my last appointment, my doc showed me the socket that was put in me and also showed me a socket he took out of a guy who put his shoulder under heavy stress on a daily basis. It was worn down to nearly nothing in 5 years and had to be replaced. With each replacement, the risks are higher and results not as good. And for me, there are no do-overs at all. I have to be content with improvement of my quality of life even though my replacement will not fix my muscle spasm problems and even though I will not be able to put my arm under heavy stress.

As I said, I am very glad for you, but the injuries we have suffered are not all the same nor are the surgeries or their results. I am very glad for you but my situation is very different from yours.

Margie

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I am well aware that no two people or surgeries are the same still there are certain aspects that we will share.Similar outcomes are not unreasonable.I am 68 years old and extreemly active and I thought that all activities would be cut off due to my replacement. I'm here to tell others that it is possible to carry on with a normal life and that with a good surgeon and active PT we can all achieve the most out of the surgery.I honestly don't expect others to be as physical as I am but for the most part when all the healing is done they will be able to do a lot more than they thought they could.BTW I have a friend that sustained a sever shoulder fracture and tissue damage in a motorcycle accident and went on to require a total shoulder . She's back on her Harley.We are who we are.

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I'm not sure what was confusing about my posts. It has nothing whatsoever to do with whether or not I am or want to be "as physical as you are". I am 53 years old and there is not enough bone left to install a second prosthesis, period, no ifs ands or buts. My surgeon showed me the one taken from the man who wore his out quickly while he was going over with me and my husband - for the third time - how critically important it is that I make my prosthesis last. I have no choice about that whatsoever. In addition, I had partial replacement done in 2004 and was recovering quickly and well when 10 months post-op, the spasms that I had dealt with since the 1980s suddenly worsened and became uncontrollable. I spent 2 years severely debilitated before they were brought under control enough for me to have something approaching a "normal" life and be able to do things like cut my own meat. I appreciate your enthusiasm and again, I am very happy for you, but I know what I am dealing with, have dealt with it for years, and I am going to listen to the advice of my excellent surgeon and take care of my prosthesis and myself. It is simply not true that "similar outcomes are not unreasonable" when there are many factors, not just whether or not there is severe, permanent soft tissue damage such as I have, that determine outcomes (including other health conditions like diabetes or obesity, complications from surgery such as infection, and more). BTW, the fact that your friend also damaged her shoulder in a motorcycle accident does not make her situation any more like mine than yours is. I was thrown off the bike and over a cliff in 1977, shattered part of my shoulder which shredded much of the soft tissue, and then I developed avascular necrosis which I had for a couple of decades. I would send you a copy of my operative report that repeatedly talks about how my surgeon had difficulty determining the difference between structures because of the heavy scarring and tissue deterioration, but I don't owe you or anyone else such information. If you want to dis me as lacking in character, motivation or will, or dis my surgeon who is at one of the top 5 facilities in the country and does over 400 replacements a year as lacking in knowledge or experience, as you seem to imply, feel free to do so but I do hope you won't do so to anyone else.

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Wow, I think you need to add some chill pills to your daily intake.I don't believe that I ever suggested that you lack motivation or will or that your surgeon lacked knowledge or experiencm mYpost was to let others who might be contemplating this surgery know just how far it is possible to go with their recovery .I do stand by my statement that similar outcomes are not unreasonable. Concerning my friend and the motorcycle, she too was thrown off the bike but I will give you the edge on the cliff.AVN is common with massive trauma in a joint area. That's why she need the replacement.Each of us has something to offer others looking for help here on this site.This is a community forum meaning everyone contributes.You've obviously been through a lot of trauma nad I wish you continued good healing , for your mind and body.

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Thank you for your insights, er, insults. I am leaving this conversation and this website now so that you can concentrate on "supporting" others.

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Hi, I'm 67 and both my shoulders were completely worn out. I had the left one replaced about 6 months ago and still do pt twice a day. It's only about 10 minutes each time and isn't painful. I had what is called a reverse total shoulder replacement. I think that is because the rotator cuff was pretty shredded. It has only been done for about 8 years in this country. On the x-ray, it is a titanium ball attached to a rod that was driven into the bone in my arm. I'm getting good mobility and almost no pain. Even my other shoulder isn't as painful because I'm using both arms. Maybe, if your surgery turns bad, you could possibly have a reverse one done. You might ask your surgeon about it. Anyway, good luck and God bless you.

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Hi Laurry,

I'm glad you are doing so well. The reverse replacement is a great option for some people but I'm afraid it wouldn't work for me. You still have to have bone on the socket side that I don't have. Also the reverse depends on having a good deltoid muscle and mine is considered "very poor" quality due to the soft tissue damage, as are my rotator cuff muscles. I just have to restrict myself from activities that put a high stress on the shoulder and pray that it lasts a long time! Thank you for your good wishes!

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I don't think anyone needs to get into who has the worst injury or best surgeon. Anyone who made it this far to even read this stuff is suffering, has suffered or will suffer even more. I've seen 5 surgeons, good, bad, excellent, indifferent. No person is the same, no injury or condition is the same, no surgeon is the same on any given day as they are only human. Getting snarky helps no one, so call it a draw, please!

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When I went into surgery on Jan. 18, I thought that I would come out with a joint replacement that would allow me at least one revision. It was a HUGE SHOCK to find out that there was barely enough bone to install this prosthesis with a bone graft and that I can not have another. The fact that I had lost that much bone was not evident on the xrays and came as a surprise to my surgeon. He was very adamant about the situation. I was told that I would be very fragile during the first 2 months because of the minimal bone and that I needed to avoid being in public, especially crowds, and do all I could to avoid an injury. This situation and the restrictions on my activities FOR THE REST OF MY LIFE are hardly something that I am BRAGGING ABOUT. It is something that I am GRIEVING. However, to be told that this outcome is or can be "optimal" and that the restrictions are not only my choice but somehow my fault ("BTW I have a friend that sustained a sever shoulder fracture and tissue damage in a motorcycle accident and went on to require a total shoulder . She's back on her Harley.We are who we are.") is insulting and offensive. I defended myself.

I also defended my surgeon when Barbara insisted that my pt program is inadequate (and thus that my surgeon is inadequate). I politely explained that my doc simply has a different approach. Barbara was in a sling for 5 or 6 weeks while I was out of the sling in 2 days. That makes a big difference in the pt approach. I did not criticize her doc or her program, I only defended mine.

I originally posted this thread in an attempt to help other people who are going through or going to go through this surgery. I put in as much practical info and ideas as I could. I did not expect to be attacked but when I was I defended myself. Frankly, I am less than 3 months into my recovery and the last thing that I need is this sort of garbage in my life. I am sorry I ever posted here.

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I'm really upset about this. I am so sorry that I ever came here. I can't believe this is called a "support" website. I came here to help other people, not get support myself, but I did not expect to be attacked repeatedly.

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I'm not sure whose post you've been reading but they certainly weren't mine. I NEVER critized YOU or YOUR OS and I certainly never said that anything was inadequate. I'm sorry that you chose to read into them and saw them in a negative light. I have been on this board for several years and have never been acused of attacking anyone. I have only offered support and many have been grateful for it. This is obviously a difficult time for you as have been the past years with your shoulder problem.As I said before, I wish you continued good healing .

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No one has attacked anyone. Surgeons have their own protocols, and they don't even agree among themselves as to the optimal treatment. If someone is only a couple months, or 3 or 4 or 6, into recovery, it is way too early to make any conclusions - positive or negative. Frankly, is someone does over 400 replacements a year, I am not so sure. Most surgeons operate one day a week, and surely not even 50 weeks a year, with vacations and conferences and such, so lets say 40 weeks or days a year. That is 10 replacements a day. Even at 2 days in the OR, that is 5 2 hr operations a day. I wouldn't want to be the last one! Probably the 400 refers to the whole department??

There is nothing wrong with doing the best one can with recovery, PT, whatever. And if something doesn't seem right, go see someone else. There are over 60 shoulder surgeons listed as the "best" on an this site: http://www.beckersorthopedicandspine.com/lists/item/8988-65-outstanding-sho ulder-surgeons-and-specialists. I am sure they don't agree on every protocol.

Everyone has valuable information to add to help others through this difficult process. Personally, I am looking at a 5th surgery within 3 years and I am not going to listen, nor have I, to any doctor who says I am at the end of the road. Advances are made continuously, and while we are fragile beings, there is always hope and determination to make the best of limitations - our own and our surgeons.

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