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At wit's end

Posted , 3 users are following.

Tiffsmom
Tiffsmom

My 17 year old daughter has suffered more than 35 posterior locations of her right shoulder in the last 60 days.  We've seen 5 orthopedic specialists, who say they have nothing they can do to help her.  The last has referred us to a geneticist, as all suspect Ehlers-Danlos.  My question is, even with an EDS diagnosis, what can be done to help her shoulder.  We tried physical therapy, but they were unable to help her do even minimal isometric exercises. Every doctor we have seen has pretty much washed their hands of us.  Right now, our local hospital won't even put her shoulder back in, because it will just "fall" out in 6 or 7 hours, even wearing an immobilizer.  They tell me there is nothing wrong with the shoulder structure itself, it's the soft tissues that are too loose to work with.  So, how do we proceed?  If they can't operate and she can't tolerate PT, will she always have a dislocated shoulder?  Any words of experience?

1 like, 9 replies

9 Replies

  • molly73011
    molly73011 Tiffsmom

    Posted

    Hello, I am the same age as your daughter and it sounds like she is going through the exact same as me! My shoulder has dislocated prosteriourly hundreds of times since I knocked it around 4 years ago! I have undergone 3 operations but am now in more pain when it dislocates than ever!!

    For the past 2montha I have been doing physiotherapy (literally lifting my hand off a cushion whilst supporting my elbow) and since this my shoulder has strengthened up really well! It makes it more painful to put back in place, but has only come out about 6 times since, whereas it was coming out more than that daily before!! I see you have tried physiotherapy but I think having a physiotherapist who specialises in hyper mobility has really helped! The main thing that's helped me is finding out that people with hypermobility move and use their joints different to others, so I have been practicing to use my arms and legs 'normally', but it makes me ache a lot!! I hope some of this can help you!

  • molly73011
    molly73011 Tiffsmom

    Posted

    Has your daughter been diagnosed with Joint Hypermobility Syndrome?

    I was also told in 2013 that nothing could be done due to my soft tissues! However since being referred to a hospital with doctors who deal with patients with JHS daily I found out that it could be due to my tissues, the bones around my shoulder or Both! But Either way there are ways to help prevent if your doctor knows how! This might not be the same for your daughter but I was told all different information from orthopaedic specialists weekly, which just put me through uneccisary stress! And I am so shocked they won't relocate her shoulder anymore! The pain I'm in when my shoulder is out is just unexplainable and I'm sure it's the same for your daughter, do they expect her to live her life with it constantly dislocated?? I really hope you find a doctor who can actually help her and doesn't just guess the answers!!

    • Tiffsmom
      Tiffsmom molly73011

      Posted

      So far, no one has done much except try braces and narcotics.  We do have a CT with contrast, but no one has made any official diagnosis (which is frustrating).  As I research EDS, I have many of the symptoms, but have always been told I was just "double jointed".  One of the scarier things for us, is a family history of aneurysm(s), both cranial and aeortic.  So, it's imparitive we get a diagnosis.  I just cant imagine what life will hold for my daughter if her arm is never going to be reduced.  We used to be able to reduce it at home, but no longer am able to.  The hospital here said that our 29 visits this month were excessive, and they would no longer set the shoulder.  Her PT and family doctor both refuse to do anything.  The ortho we were supposed to see last week cancelled the appointment after reviewing her records, and referred us to a geneticist.  It's very frustrating and very painful.  I don't know who else to ask to help us, and feel like no one wants to help.

       

  • evie64
    evie64 Tiffsmom

    Posted

    Hi Tiffsmom, 

    so sorry to read of what your daughter is going through, I have hyper mobility, I have also been diagnosed with Ehlers Danlos Syndrome type3/4. 2 weeks ago I had my shoulder operated on and I would not recommend it at all. I'm in extreme pain now right down yo my wrist.  I know it's not what you want you hear but braces, painkillers and strengthening exercises are probably the safest way forward at the moment. I would also avoid Tramadol as they are very addictive and have more cons than pros. I wish your daughter would have some less painful days. 

    • Tiffsmom
      Tiffsmom evie64

      Posted

      I'm sorry to hear that your surgery hasn't helped. I'm not wanting surgery for my daughter, but can't understand how physical therapy can help when she's unable to tolerate the slightest of motions. She sneezed the other day, and dislocated. This happened twice. Both times she was wearing the immobilizer brace. Are there specific exercises PT can do to help at this point? It seemed that the week we tried PT (before the ER doc discontinued it), we had more dislocations than previously, as if the muscles and soft tissues were stimulated and freaking out. At this point, we are just hanging out, quite literally, waiting for someone to give us direction and hope. Hang in there with your shoulder...I hope it heals quickly for you.
    • molly73011
      molly73011 Tiffsmom

      Posted

      I think everyone with JHS and EDS suffer from different symptons! Your daughter sounds like she's going through a lot of what I did, but with no help from your doctors which I just can't understand! My shoulder has come out just walking along before, but if We can't get it back in, a professional needs to! when I was first referred to my physiotherapist I was really worried because I done a day in my local hospital and my shoulder came straight out as soon as she lifted it! Now that I'm seeing someone who knows what their doing and has taught me how to use my shoulder properly, my shoulder hasn't come out doing my exercises at all! my shoulder Does still dislocate, but once the tissues and muscles get stronger they'll be able to operate because my shoulder will be strong enough to handle it apparently! I'm not looking forward to the op as my first 3 didn't work!! But I have brilliant doctors now and trust them with my shoulder completely! You need the same! Where abouts are you from if you don't mind me asking?? Was your daughter given entonox to relocate her shoulder in the hospital? If I can't get my shoulder in now I ring an ambulance for the Entonox (gas and air/laughing gas) and while I'm on that my mum or partner will relocate it! I'm on dihydracodine but it doesn't touch the pain! I'm sorry It's not much help but hopefully she can relate to what I've been through and know at least she isn't alone there are so many people out there with JHs and EDS who just aren't getting the help they need! They are horrible unnoticed conditions!
    • Tiffsmom
      Tiffsmom molly73011

      Posted

      We live in central Nebraska, in the US. I think part of our problem is the physicians unfamiliarity with the syndrome. I am hopeful that the geneticist will have a referral list. I question the docs decision to leave her dislocated indefinately, although since that time 4 days ago, she's been able to rest and relax. The tension of visiting the ER 3 times a day and spending 2 or more hours there each time was exhausting. I've been researching doctors who specialize in EDS or hypermobility without much luck. Even her pediatrician was at a loss. With all the medical procedures out there, both surgical and non, it really scares me to continually hear doctors say "there's nothing we can do." I'm glad you've found someone who helps you and are seeing progress.
    • molly73011
      molly73011 Tiffsmom

      Posted

      Iv'e been having a look online and sadly can see that there are barely any speialists over in the US at all! They all seem to be in London! Which is okay if like me you live in an area close enough to travel comfortably, but you clearly don't. ALL the specialists seem to be over here! I was in the same position with my shoulder coming out daily and sitting in A&E for 5+ hours, but at least I was getting help! I really hope your Geneticist can refer you to someone that will help your daughter and give her some good news to work with rather than worrying her all the time! I'd love to be able to give her my e-mail and see how she's getting on after her appointment if thats okay
    • Tiffsmom
      Tiffsmom molly73011

      Posted

      Our meeting with the Orthopedic Surgeon in Omaha at our University Med Center was helpful.  While he wants to pursue Physical Therapy for a period of time before any consideration of surgery, (we all hoped there was an easy button!) he is willing to work with our Physical Therapist and help him manage my daughter's health.  This is OCEANS more than any previous doctor has offered or committed to, and especially beneficial as our therapist is eager to help, but unsure of how to proceed with her delicate shoulder.  This doctor also showed me how to reduce the shoulder.  All the previous doctors had been using and showing me reductions for anterior dislocation.  She has posterior dislocations, so they were ineffective for me to help her with at home.  Funny how the right tool makes all the difference!!! 

      We meet with the geneticist tomorrow.  The doc we saw today agreed that he feels strongly that she has EDS.  If the geneticist finds that she has EDS, with he want to test my other children?  How does that work in families?  If she has EDS, does that mean that either I or her father also have EDS, or are we just "carriers"?

      Additionally, the doctor we saw today wants to begin specific strengthening exercises for her on her other joints to prevent the similar from happening.  This makes 110% sense to me.  Let's not do this again!!!  Also, he has a colleague who practices in the UK who has promising information for future reference if PT proves to be unsuccessful or not tolerated. 

      This all makes me feel very good.  It's as if someone finally listened and explained and took hold of the reins to help us start controlling this to the best of our ability.  My daughter has a million questions, as do I.  But we didn't arrive in this spot overnight, it only makes sense that it will take a while to sort through everything. 

      Can anyone tell me if the incidence of EDS is higher in the UK?  It seems that you have many resources there that we dont here in the US, and I wondered if it is because of concentration or if it's a reflection of the medical communities.  It's also interesting as my grandfather immigrated from the Netherlands, and of all the relatives, I believe he exhibited the most symptoms.  Wow...my brain is in hyperdrive tonight. 

      For tonight, I will celebrate the fact we found a professional who cared enough about my daughter to answer questions and help us make a plan.  That, in itself, is wonderful!

       

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