Total left reverse shoulder replacement - please help!!

Bones, joints and muscles
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Hi there, I'm very new to this so please bare with me. My name is laura, I have just turned 32 years Old and just had operation number 17 on my left shoulder, the latest in the long line was a total reverse replacement on 25/05/13, I know some of you will be thinking its too soon to tell if it has worked or not but here are my concerns - ever since the surgery I have been in an awful lot of pain, to the point that walking is painful as my operated shoulder feels very loose and that its moving about, also my shoulder looks like it has dropped more every day, I am wearing the sling as I have been advised but its still feels very painful and loose. I have been put on very strong pain killers (dihydrocodine, oxynorm(immediate release), OxyContin(Slow release), paracetamol and ibuprofen, and after taking them I'm still in pain, and its obviously stopping me from sleeping,

My surgeon has told me that there is only about 5 people of my age that he knows of that has this op as they don't like doing it on "young people".

Has anyone had this operation, and is how and what I am feeling normal?

I look forward to any advice or comments,

Thank you in advance.

Laura

P.s I know this is going to sound a little strange, before leaving the hospital, I took a picture of the X-ray of my shoulder post op so I could show my son. I have been told (as previously said) that I had a Total reverse replacement, after looking for forums about shoulders I come across photos, and my replacement does not look like the photos I have seen online. If anyone knows anything about this and would be willing to take a look that would be amazing - just want to check I'm not going mad

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I have put my shoulder X-ray as my profile pic, it is a before and after replacement,

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I had a reverse replacement in March. That xray looks like a conventional replacement to me, not a reverse.

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On the other hand, it could be the weirdest looking reverse prosthesis I have ever seen, and I have done a LOT of research! How are you feeling now?

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Hi Misty57, thank you so much for replying. What you think are my thoughts exactly - just wish my surgeons were straight with me. As for how I'm feeling? I'm very sad to say that m worse now then when I was when first posted on, since posting I have found out that although the prosthesis was "custom made to fit me from my CT scans" they had trouble fitting the new joint as it was too big so in their words have lengthened my arm to make it fit which has obviously had serious knock on effects and caused sever nerve, muscle ligament etc etc damage. I'm so fed up with it it all. Tomorrow will be 6 weeks since the operation and u was hoping to be well on the road to recovery, instead I'm worse now than I have ever been, I can't even cuddle my children without it causing copious amounts of pain and reducing me to tears. How are you after your replacement?

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I will never be great either. I am in my later 50s, and that was my sixth surgery, third replacement. I had a hemicap, then a total shoulder, then the reverse, all within a couple years. So, I have chronic pain, and the range of motion is not great. There were two fractures during surgery, so was immobilized for 6 weeks. PT is very slow. Did you get your operative note? That should give you some idea os what went on.

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Hi Laura, I can't even imagine 17 shoulder surgeries! If you don't mind me asking,what was the original illness or injury to your shoulder? You seem too young to have advanced osteoarthritis, and must have been very young when you had your first repairs done. So I'm assuming it must have been an accident or injury. I can't even think that a Doctor would,or could cut you up in the same area that many times. God love you,you will be in my prayers. I am 60 yrs. old and have been advised that my only option is replacement of both shoulders. After reading your history,I'm thinking NO WAY. I wish you the very best of luck.

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Pam, some people, myself included, have multiple surgeries for very unusual reasons. For the VAST majority, replacements offer a patient an immensely improved life. The problems arise when there are revisions due to highly unusual circumstances. The question you have to ask yourself is whether you are in such misery that your enjoyment of life is compromised. I hope you make the right decision for yourself, not based on other's experience. I had three replacements within 2 years due to problems, but know of many people who are thrilled with their new painfree lives!

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I live in the US and have had 6 surgeries on my left shoulder. My first total replacement had to be revised 4 times resulting in a total reverse replacement 2 years ago. I thought that the pain could not get any worse so I went ahead and had it done. As of this date, I am in so much pain & hardly have any use of my left arm. I too am on strong Class II narcotics and they do not help. Have gone for X-Rays & nothing has loosened so I'm told there are no issues.

I have copies of all my films and I know I had a reverse replacement. It's very obvious. Not sure what to tell you but if you indeed feel that things do t look correct maybe you can see another surgeon or Family Practitioner. You are very young indeed to have had this. I am now 64 and very active and incredibly frustrated. It seems that no one is listening to me. They want to keep giving me drugs which at this point I've refused any OXY. To make my situation worse my right should has had 3 survives & they are telling me I might need replacement. Now I'm stuck. How would I function with no mobility. Sad to say: take my left shoulder & remove it. The pain is unbearable even when sitting doing nothing. You are not alone. Sad that we are at the mercy of doctors that do not listen and treat us as individuals. But....get your X-ray films rechecked. You really need to see another Physican.

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My reverse was 2 years ago, and the pain never did decrease.  I finally had an intrathecal pain pump installed.  It is of course invasive, but is much much better than pain pills.  It directly diminishes the pain and has none of those horrible side effects of narcotics.  I have it filled about every 4 months - easy process.  The surgery is a bit of a bear, bit not nearly as bad as any of the shoulder surgeries i have had.  I wish i would have gortn it before reuining my natural noint with 3 replacements in a row.

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Sorry for the typos!

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First. Do t apologize for typos. I like to blame "Apple". Lol. My docs don't want to go the pump route. That was discussed too many times. I'm so glad that you are getting the relief from it. I do know that my body grows adhesions rapidly and all I've been to is "frozen shoulder ". PT is now out of the question and of course more surgery just makes more adhesions.

I've had to travel at my own expense to other states to get more expert opinions but it's the same everywhere. I agree. I never should have had the initial replacement But such is life and keeping a bit of humor does help

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I was thinking about your pump. What medication are you on with it? If you don't mind me asking. Here in the US our government keeps such close tabs on controlled meds that even monthly scripts are getting to be a hassle to fill. They keep reclassifying drugs making it so that my doctor has to write an original script each month and then which ever pharmacy you go to is only allowed to stick a certain # of pills so getting scripts filled is almost a full time job -

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I was full of scar as well.  Is that why they will not do the pump?  I love it.  I still need the sling when i hike, and wear a brace at night to keep the arm still.  I also did the East Coast tour and ended up in boston although i live in ohio.   600 miles one way each time for two replacements.j

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I have dilaudid and bupivacaine in it.  Just love it!  I also hated the hassle of getting scripts every month.

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Was typing response then looked at your X-ray and lost my entire conversation. But I'll rewrite later. Wow. That looks to me like a regular replacement. Mine is a reverse. The ball & socket are reversed.  Maybe they gave you the wrong X-ray 

s. -   Will finish this later. 

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I've had the same problem ive jumped thru so many hoops w/ my surgeon ive probably seen him 30x since ive had it done i had it done @ 22 y.o. and have been in nothing but T-total PAIN.  I even cry myself to sleep some nights, it hurts that bad and has affected my quality of life.  except i had a Total Shoulder Replacement (L)  and no lie its been nothing but excrutiating pain and problems.  

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Hello to everyone. I see that i am not the only one suffering after shoulder replacement. I am 50 yrs old and had my right shoulder replaced on August 28th 2015. After suffering for 10 years from the pain of a work related injury and then arthritis in it, I thought I would finally get some much needed relief after the replacement. No such luck. It is worse now then it ever was preop. I had to have some extensive repairs done tomy bicep and bicep tendon during the surgery, and my Dr feels this is probably what is causing me so much pain now. I go back to see my Dr next week, for my  8 week check up. Last month he assumed it should have felt so much better with the replacement, my range should havebeen better, but it isn't. I currently take 4mg of Dilaudid  every 4 hours for the pain, but I think I must be buidling up a tolerence to it, as its not helping much any more.

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I forgot to mention, that  early in the New Year, I will also have to have my left shoulder replaced as well. Sleeping isn't an option since the pain in both shoulders prevents me from getting any sleep longer then 2 hours at a time

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I had a rTSA in December, 2014.  Everything you say about your experience seems to very clearly indicate that there are major problems that need a GREAT doctor to repair.  The doctor who does the surgery is more important than anything else!  S/he MUST be very experienced, and have a suerlative  percent of terrific outcomes. The issues you are dealing with sound as if they are not going to get better without surgical intervention.  But NOT with the doctor or doctors you have already gone to.

I don't know anything about English doctors or hospitals, being from the U.S.  But there isn't anything more important than your health.  And it's hard to be healthy when a major joint is not.  If at all possible, going to America would be a really good idea.  The Hospital for Special Surgery, in New York City has been #1 in orthopedics for at least 20 years.  Many of the doctors their have done many rTSA, and they know what they are doing when it comes to correcting the mistakes of others, too.  You can look online at the numerous research papers and presentations these doctors have made.  And read about the doctors various accomplishments.  Even if you can't or won't to go America for help, you can educate yourself about what youo need to know, in order to know if any particular doctor is making sense. 

My shoulder was in the rTSA than anyone in the U.S.  The ball of my big arm bone (the head of the humeral bone)  had collapsed, so that it had gone from a ball to a "low slung mushroom", as the doctor who had taken the x-ray said.  All the bone shards and debris from the collapse was still inside my shoulder for months before my surgery.  On top of all that, all the muscles of my rotator cuff were retracted, and torn, so not one of them still worked.  Somehow I had managed to keep a full range of motion and considerable strength throughout the 20 or so years since the first shoulder injury I had.  But my  shoulder was a mess.

I ended up with that shoulder being the best joint in my body.  It doesn't  hurt, it is really strong, and I have a better range of motion than most people who have never had shoulder trouble.  My doctor made ALL the difference.  And all the support personnel at the hospital were terrific.  

I live near Chicago, Illinois.  And I went to New York City for my surgery because I wanted the very best doctor I could find.  Chicago has an abundance of doctors, and many who do  rTSA.  But I wanted the one who might have taught them to do the surgery.  I wanted the one who created the prostheses these other doctors were using.  I wanted the best.  So I travelled to get the best.  It was a trip totally worth it.  1500 miles is a walk in the park compared to travelling to NYC from England.  I know that.  But how many years of your one life are you willing to suffer through, Lulublu?  You don't have to come to America.  But you really do need to find better doctors.  I know all too well how incredibly painful a shoulder can be.  And how dysfunctional it can be.  And the major impact it has on everything else in your life.  And I know how amazing it can be to have it fixed right!  Waiting won't help.  Educate yourself, and shop diligently for an orthopedist who truly gets it.

If you can't drop over the pond to America, then mabe you could send your imaging and a letter to a doctor here.  And then you could talk to him or her on the phone. Or email.  Maybe someone there could make recommendations for a good doctor where you are.  They have international connections.  I'm sure they could at the very least give you a good idea about your condition now.  Don't wait, Lulublu.  Your shoulder will not heal itself.  And to get any of the pain to diminish, you will lose function, range of motion, and strength.  No matter what's wrong now, the right doctor can make it better!

I wish you good fortune, Lulublu31.