Hip Brace & Hope (Read to bottom for a GOOD shoulder update)

  Here is a new hip brace for my daughter to try. I'll fill you in. First, I see a lack of options for people with conditions like this. For starters, if both hips are subluxing, there is not a bilateral support, of this type, available. The reason is...not enough demand. So, instead, we use braces designed for post surgery, which are not exactly the right tool for the job, but as close as we can get. Also, we are not sure if this will hold up to the kind of wear that it may require. These are very expensive items, and without knowing more about how it will work or hold up, it is a big gamble. After my daughter has used it through a long enough span of time to get a feel, I will come back and update.

So, why do we have this and what is it for? My daughter stood up one morning, as she does every morning, but this time was different because she passed out upon standing. She fell to her bedroom floor, and her hip and both shoulders were "out". I heard her thunk, and went upstairs to see what was wrong, and found her in this situation. She woke up, quickly, but she needed help getting herself seated so that she could start putting joints back into place. It was a painful and frightening experience, but luckily the hip made a loud "thunk" and settled back into place, followed soon after by each shoulder. The trouble was that the hip began popping "out" easily and often over the next 7 days. 

The orthopedic surgeon examined our daughter and determined that the joint is not likely to be dislocating, but instead to be subluxing. We understand that the hip is a huge joint, and if it was fully dislocated, I can agree with the doctor that it would not likely be something we could manage on our own at home, in terms of reducing. The brace is suggested to add support in the form of feedback. If my daughter pays attention to the cues that the brace will give her, she can find herself in better positions throughout the day. For example, she has better stability with her legs at shoulder width apart. The brace begins to pinch, lightly, when the feet come close together. It is not enough of a pinch to make force a change, so it is a definite team effort for the brace and the wearer. The comfort is good. My daughter reports that it feels safe and secure, and it provides her with a sense of security.

Looking at this brace, on, I don't see how it could possibly prevent a sublux, but I do see how it can provide constant feedback. My daughter will wear her brace only during sessions of instability with the hip, or when she feels like it is sensitive to the point that it may sublux. That is our plan.

We have a wonderful team of people at the bone and joint institute bracing store who help to find solutions for the instability problems. This may not be the only or best option for her hip instability, but it is good to have some form of help. When the hip is unstable, there is almost no activity that is safe.

Regarding the fainting session that started all of this, we will be following up with a cardiologist in the new year, and I will post if we learn anything helpful to share at that session. She is already diagnosed with Autonomic Dysfunction/POTS and she does tend to pass out about once every 1-3 months. She has no warning for this, so she just falls and wakes up almost immediately. These falls are terrible for any person, but especially for someone who dislocates so easily.

Some good news...the shoulder instability that plagued her for years has come into her control. I don't think anything has changed in her anatomy, but it is possible that some minor tears have finally healed after so much break time. I don't know about that, but I do suspect that she has learned how to "brace herself" all the time. As long as she is not startled or taken by surprise, she seems able to do all normal activity without shoulder instability. She is able to stay in school longer and when her shoulders dislocate, she has been able to reduce them quicker. We had all but given up hope that her shoulders could improve. It was years of multiple dislocations every day, and so many doctor and surgeon visits telling us there was no hope. To come out of those past 3 years with this year...it is HOPE! And I want to pass that HOPE on to whoever is reading this. Don't give up. 

Kiddo is back to physical therapy again in a week, to start a new session. This session is geared to support her hip issue, though I am sure they will focus on core and full body. We have a great PT team here, as well.

So, that is the update for the moment. Let us know if you have found success with supporting your hip instability, and if so, through what measures? Also, if you have any questions about this post, please feel free to ask in the comments. Thank you!

--- Follow up on hip brace ---
After giving it a good try, the hip brace has proven a poor tool for this situation. Because she needs bi-lateral support, the brace only aids one side, primarily by giving her feedback for awareness. She subluxates so frequently, however, that it doesn't help or work because having the brace on makes it hard to reduce subluxations when they occur. We will consider it for a one sided hip flare up, but not working when both hips are flaring and shoulders are flaring, due to the restriction affecting reduction.

What is EDS hypermobility type? This article breaks it down.

http://www.dynakids.org/Documents/hypermobility.pdf This is the best article I have read for explaining the basics of joint hypermobility (EDS) and the common related issues that so many people experience. I can see this being useful for schools, family members, and some medical team members, too. This is not an in depth technical article, but more of an easy to understand for anyone type of article. Joint Hypermobility and Joint Hypermobility Syndrome Written by Dr. Pocinki.

Autonomic Dysfunction explained today

At the one year check up, the doctor gave further information on Autonomic Dysfunction, and I found it very fascinating.  This is particularly interesting to me because I know I had this as a teen, and I still do struggle with some symptoms as an adult. I would bet my mother deals with this, as well, based on the doctors explanation. What surprises me is that no doctor has mentioned it to us in the past. With such classic symptoms that we have in our family, I am surprised it has always been missed?
Here is what we learned about Autonomic Dysfunction today:

  • Can cause heart racing, which can be anxiety feeling or "bad" feeling
    • advised to exercise daily, both strengthening and aerobic
  • Low blood pressure 
    • advised to drink a lot of fluid each day (3-4 liters), and to increase salt as well as to add Gatorade G2 or Propel type drinks. Advised to stay away from "smart waters" because for this purpose they are "dumb water".  They don't have the needed salt.
  • Can black out or faint due to good blood flow / blood pressure
  • Can be at its worst 1 week prior to menstrual cycle
  • Can tie into delayed stomach emptying, increased stomach acid and make a person feel like they are constantly hungry and or nauseous 
    • recommended to eat more frequent small meals
    • also recommended to look into gastroparesis diet for delayed stomach emptying, click here 
  • Can affect sleep - adrenaline flight or fight response kicks in
    • mentioned beta blockers can help with this at bedtime, though we are not trying it at this time
  • Fatigue is common 
  • Headaches are common
Of course there is more to Autonomic Dysfunction that this list, but these are the items that spoke to us as we were in the office. Doctor gave us a packet from Mayo Clinic called, Teens and Autonomic Dysfunction, found online here . This is a great handout for schools and a fantastic item for teens to have at home, as a reference.

Follow up from Chicago shoulder surgeon

So, today we reviewed the left shoulder MRI arthogram and it looks good. That is fantastic news. Even with the many dislocations, that shoulder is holding it's own. I asked the surgeon about the allograft techniques and patches that some are doing. He mentioned Dr Millett's innovative work in this area, but his opinion was that any move toward this type of procedure was a guarantee for arthritis in that joint in upcoming 2-3 year time frame. He did give me two names from Mayo and he advised that if we wanted to go further down that route, go to Mayo. He said Chicago does not have answers for us. He said no one really had a solution for us, but he definitely indicated that Mayo or Boston would be better places to look.

He was friendly. He answered my questions. I just wish there was something better to say on the subject. He did agree that new advancements and discoveries are always being made and that we should keep eyes and ears open and keep on hoping for something better than the non options we have here.

When we moved to Chicago, I felt certain that we had the best medical care in the world right outside our door, and I still know that we have fantastic doctors and nurses around our area. I am just surprised that the best and brightest in Chicago are all sending us packing. It does start to feel like the world of shoulder experts is a small one, and they all seem to know of each other, if not know each other from school or working together.

So, what is the plan? Keep balancing this line between rest and exercise. Keep staying home more than going out (dual enrolling in school, using wheel chair in crowded places). Keep wearing the brace and possibly pursue a second custom brace in the future. Keep learning how to support the shoulders through core strength and posture. Keep hoping, researching, growing, learning, and moving forward. And, even though it doesn't look like our daughter will be able to stabilize these shoulders, if we can help her to stay stable enough to avoid living in immobilizers, we have won a small victory. She is doing much better since we started homeschooling. So, as small a plan as it is, that is the plan for now.

Cryoderm Icy - a step up from Biofreeze

Where Biofreeze has about 4% active ingredient in the roll on variety (we have a Biofreeze spray with 10%), CryoDerm has 10%. It's stronger, and it helps us with neck pain, or for temporary relief around knees and shoulders. This is strong, and would not work for everyone, so you may want to get a sample pack first. I have found this very reasonably priced on Amazon, though I have not located it in person as of yet.

Scapular Dyskinesis

This was written in a report for kiddo as something she is dealing with, though no real explanation or plan was given to us in relation to this muscle retraining situation. I don't know if she is able to do the PT required to retrain muscles at this time, but I was given this article by a young woman who has worked on this very thing. Posting it here to read and ask the PT about during our next visit.
http://www.ncbi.nlm.nih.gov/pubmed/12670140

A second article -pdf - that explains how to put this into practice. 
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1323395/pdf/jathtrain00003-0099.pdf

Standing Still

The recent meeting with the shoulder surgeon resulted in the same direction as the previous shoulder specialist and the general surgeon before that.  They all concur that there is not a surgical fix. They all concur that any surgery will fail within a short time period due to the connective tissue disorder. While the geneticist says that the surgeries will be a success in that they will add some stability, the surgeons say no way. Further more, we are told that getting one surgery will lead to another and another, and ultimately the surgeries and post healing will lead to increased damage beyond what the dislocations are doing.

What did we learn? We learned that she is not a strict posterior dislocation case and that she is truly multi directional, which makes sense. It was good to have it confirmed so we know just what we are dealing with. We were advised to go to Mayo if things got worse, but to otherwise plan to live this way. We were told that as she ages, her body will grow muscle mass that can help (if strengthened) to hold those joints in. This may be enough for her to learn to hold her own shoulders in, if she is willing and able. We were told there is no hope for a surgical fix when she stops growing.

The Doctor was nice enough and he is a well respected expert in his field. I asked if the ongoing hundreds of dislocations could have created a specific injury, over time, that could be fixed to help increase a level of stability.  He said he followed that logic and that we can order a MRI Arthogram of the left shoulder (as we have not had an MRI on that shoulder) to rule out anything major. He stressed that it would, indeed, need to be significant to result in surgery and if it were a small tear, as she has had in the past, they would let it heal on its own.

The appointments with the geneticist give us hope, as he tells us about surgical solutions that can decrease the severity of dislocations, or at least decrease the number of them. Not a total cure, but a respite. But the surgeons (and we have talked to 5, in total, now) all say No. So, our hope is raised, and then dashed again and again.

The latest doctor told me that we could keep chasing surgeons until we found one that would do surgery, but that we would regret the 6 months of painful recovery and the short lived benefit followed by the damage that would result once regression took hold. He did advise Mayo, again, for future investigations if needed.

So, we know roughly where we stand. It's a precarious position to balance, if you ask me.  It could be worse, so we must gather our blessings and move forward to the best of our abilities within the confines of movement that work the best for our daughter. In the meantime, I am awaiting a brilliant discovery or medical breakthrough that will make it all easier for her. That is my latest depository of hope.

A New Year, new specialists, and hope.



Nervous. New year, seeing a new shoulder specialist next week. Odds are he will order more tests, which are difficult for our daughter. Worried he will suggest to surgically fix her. Worried he will suggest there is still no fix. Kiddo expressed that last year was her favorite year because she had friends in school and it was fun. She says being at home for school makes her miss out on the interactions she enjoyed in her AP classes, with kindred spirits. Of course, she can't stay in school because her shoulders sublux and dislocate when she is there, but she wants to be there. And she wants to be able to go to high school next year. I have no control over any of it, and when the new year starts, and new specialists are on our immediate horizon, it gives me a panic and makes me feel tiny. So much hope goes into each of these appointments, and the track record is to leave with heartbreak and increased pain. Still, for now, we hope.