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Total left reverse shoulder replacement - please help!!

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Lulublu31
Lulublu31

Hi there, I'm very new to this so please bare with me. My name is laura, I have just turned 32 yearsOld 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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  • tyler79013
    tyler79013 Lulublu31

    Posted

    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.  
  • rottiemom65
    rottiemom65 Lulublu31

    Posted

    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.
  • rottiemom65
    rottiemom65 Lulublu31

    Posted

    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
  • info
    info Lulublu31

    Posted

    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.

    • cathie38426
      cathie38426 info

      Posted

      so glad to hear a positive outcome. We are seeing

      a shoulder specialist re reverse shoulder prosthesis for

      my husband and are having problems getting info re successful

      operations of this type.

      Cathie

    • Ed101682
      Ed101682 cathie38426

      Posted

      Hi Cathie  Im a 63 year old male who has total rotator cuff arithropy in his right dominat shoulder along with heavy duty arthiritis. In short my arm dont work at all much  I dont have alot of pain but the only thing that caan be done for me is a reverse shoulder replacement.

      of  course it doesnt restore strength and may not be successful  high rate of failure. Im Going to see a Top NY Shoulder Doc soon Dr David Dines who has done many and has even devised his own prostheies   Let me know what you guys are planning ok

    • Ed101682
      Ed101682 info

      Posted

      Im a 63 year old male who has total rotator cuff arithropy in his right dominat shoulder along with heavy duty arthiritis. In short my arm dont work at all much  I dont have alot of pain but the only thing that caan be done for me is a reverse shoulder replacement.of  course it doesnt restore strength and may not be successful  high rate of failure. Im Going to see a Top NY Shoulder Doc soon Dr David Dines who has done many and has even devised his own prostheies   Let me know what you guys are planning ok
    • cathie38426
      cathie38426 Ed101682

      Posted

      As I read it if reverse shoulder replacement is done

      as a first shoulder op where there is arthritis in the joint,

      plus rotator cuff 'shredding' the success rate is good in a patient

      who is otherwise healthy. It relieves pain and gives varying

      amounts of movement.

      It is more difficult where there has been surgery already or after

      an accident.

      my husband's op is Thursday next. He is 80 years.

      Cathie

    • Misty57
      Misty57 cathie38426

      Posted

      Very best wishes to your husband - the reverse was designed for people like your husband!  Hoping his pain is diminished completely!
    • Ed101682
      Ed101682 cathie38426

      Posted

      Thanks for your reply Where and by who are you having his surgery done.?  I know the more surgerys you have the worst a reverse shoulder placement works for. Im just concerned of course because the sucess rate is like 50 percent.  Also I have to pay out of pocket as most insurances dont cover it  It is an elective surgery   Im going to meet wit the potential surgeon this Tuesday  By the time you read this ill know more.
    • Ed101682
      Ed101682 Misty57

      Posted

      Hi Misty   Did the reverse shoulder implant work for you   I still have good range of motion but no real strength in my right domiant shoulder. The bone in there is now bone on bone with some loss indicated on recent Xrays.
    • Ed101682
      Ed101682 info

      Posted

      Hi Im in New York City area. HSS is a great hospital for sure. Can you tell me whatr doctor you used there  Id appreciate it.   i will soon need a revers shoulder replacement. Rotator gone full artritic shoulder   Thanks
    • don940
      don940 Ed101682

      Posted

      Hi Ed,

      I'll be a little brief for now, it looks like there is a lot of people with our shoulder problem.

      Feel free to pass this on to those who need it.

      Dr. Gillespie at University Hospital, UH, in cleveland Ohio did my right shoulder July 25 2013, about 2 1/2 yrs ago, it's great!!!

       As a note to others I reviewed, it difintely looks like a reversal, ball on top socket on bottom

      Mine is not arthritise, but a series of accidents. 

      supraspinatus, major rotator cuff, was gone on both shoulders.

      I turned 72 in Oct. Spent nearly 25 years on the national Ski Patrol up to about 1996. Had a few minor sking crashes that involved several parts of my body, one being shoulders.  No brakage but shoulders took a beating. In 1992 feel backwards 18' off roof landing and crushing right side, collaped lung several ribs breaksoff spine, ect. Down for about 3 mo. Still had range of motion but took over 2yrs to throw a ball to my son carfully.

      About 2002 got flated by 7 exterior doors working part time at a home improvment. becarfull there, employee didn't unpack correctly and I was getting one for customer and over they came. Store said I had precondition condition so no coverage, an other story.

      Lost range of motion in right shoulder and left was tromatize but functioning.

      Had trouble finding Doc to fix me. For several years got steroid injections in both shoulders, as much every 3 mo, misstake!!

      But one doctor sad he couldn't do it but Dr Gillespie could.

      Almost done.

      Just before right shoulder surgery, left supraspinatus, major rotator cuff, was gone. Pain was incredable but subsided after couple of weeks. Massive stength loss but still full range of motion. Eventually left will be done also.

      Stength is slowly comeing back. can pick up 35lb gas cans no problem.

      2 days in sling then used it light but freely.

      Feel free to write back. Sorry wasn't that brief.

      Good Luck Ed

       

    • Misty57
      Misty57 don940

      Posted

      Hi Don. Glad all is working out! I had a humeral head resurfacing done at UH. Unfortunately it was put in too high and created the problems that sent me to Boston for the reverse 3 years ago. I am tied to UH now for maintenance of my pain pump, and Boston for shoulder follow up.
    • don940
      don940 Misty57

      Posted

      Hi Misty,

      Sorry if for future delays in responding my schedule is pretty tight.

      Sorry about your pain level. I would see Dr Gillespie at UH if possible.

      He is young and has experance with this proceedure.

      Reversals have only been approved by FDA in the states for about 10yrs now before it was done in Europe for quite awhile.

      Possible your Dr was new at it. You shouldn't have that much pain.

      He gave me an oxy based pain killer after surgery but only used for couple of days, no real pain since. 

      Prior to 2013 shoulder surgery I had several "trigger point " steroidal injections in both shoulders at various attachments where was generated from over use since about 2002.

      I was told by ortho Dr not my pain control Dr to many injections could soften tissue enough tear more and possibly release as mine did.

      So becareful which you use.   Talk Later, good luck

    • Misty57
      Misty57 don940

      Posted

      I don't get injections, I do understand about the problems !
    • Ed101682
      Ed101682 don940

      Posted

      Hey Hi Don  Thanks so much for getting writing me it was great. My right shoulder started many years ago i guess with various rotator cuffs and tears. I have full and complete rotator cuff tear and osteoarthiritis of the shoulder. There is bone loss as Im riding high in the shoulder no space left. It is my dominat shoulder I have very little real strength but go figure a good rannge of motion. As I write I dont have pain but I do have discomfort joint is fully arthritic. I saw Dr Dines yesterday and he said my only option is to get this procedure done. However, he said my range of motion is better now then it may become after implant. He uses the Biomet device which is supposedly a good one. He doesnt take my insurance so I will have to outlay for it. Im trying to put this off cause Ive seen nothing but problems with these things. Anyway my life is changing rapidlywith this. I have one tendon the teres minor which is still working. So here I am with a prisoners dilema lol
    • Ed101682
      Ed101682 info

      Posted

      Hi What Doc in NYC didi you use
    • Misty57
      Misty57 Ed101682

      Posted

      Ed, if you have good ROM and no pain, it may be a good idea to wait.  There are significant risks, and it does not. It last that long.  The research says that there is deterioration on xray in 5 years and function starts declining by 7-8 years in general.  All I have left is the teres minor too.  Zero internal and minimal external rotation.  I can touch my head, barely. 

      I have a great surgeon in Boston - he did NOT want to do the reverse at all but since the total shoulder had failed completely, and the head wasup and out forward, I had no choice.

    • don940
      don940 Ed101682

      Posted

      Ed, if I'm correct, relating to my case my supraspinatus, which is the major tendon holding the ball in the socket correctly was totally gone making it impossible to raise my arm without assistance. this made a reverse implant for me because it kept the ball and socket in position.

      The supraspinatus didn't have to be reattached because it was no longer needed, make surgery and rehab much easier.

      In your case I'm only guessing that if your supraspinatus is intact and they don't have to detach it for surgery your best bet is a standard inplant not a reversal.

      On the other hand if they have to detatch the supraspinatus for your surgery you'd be better off with a reversal and not reattaching the supraspinatus. repairing it at our age is not easy and 6 weeks in a sling.

      For the most part my surgery was "almost" pain free and 2 days in sling then use it. A couple weeks for incision to heal.

      Oh, i just saw you have only the teres minor left. You'll do great.

      The only ROM I've lost is so small it's hardly noticeable and that's reaching in back pocket for wallet or back loops for belt.

      TSA at airports play hell with the belt thing, LOL

      Don't know what i'm going to do when I have other shoulder done, wear suspenders so i don't lose my pants at TSA

    • debbie36227
      debbie36227 don940

      Posted

      You are correct about the supraspinatus is the major tendon. I had rotator cuff tear surgery in October. Yes I had to wear the sling for six weeks. It is no fun! Lol
    • don940
      don940 debbie36227

      Posted

      I had a hard time trying to get an ortho doctor to recognize I had a torn supraspinatus. All I knew was I couldn't rise my hand over my head since 2002 when I had a pile of doors fall on me working at Lowes. Their attorney said it was a prexisting condition from a 1992 fall.

      Basiclly they said no pain no surgery, live with it. A little more invloved then that but ok for now.

      Finally after many injections over the years in both shoulder I found a young ortho Dr Parsons East of Cleveland Ohio in a group that I felt swept me under the table.

      He said that it's so far gone he couldn't save it but Dr Gillespie at UH in Cleveland could with a reversal, rest is history. Execpt, the left one let go just before my 2013 right replacement. Have full range of motion but only about 20% strenght. When time comes it's probably easier to have the reversal than 6 weeks in sling and rehab like you.

      good luck debbie

    • Ed101682
      Ed101682 Misty57

      Posted

      Hi Misty well im going to try and wait a bit I know these implants dont work long  I wonder when they wear out how do they revise them OMG
    • joy64336
      joy64336 info

      Posted

      My husband needs a reverse shoulder replacements on both shoulders. Would you please share the name of the doctor you used in New York.We live in U.S.A. and really would appreciate it. joy64336

       

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