A Bit of Background

We have been on sort of a holding pattern for a few years now. Going into physical therapy only if he was having bouts of pain or with an acute injury – but otherwise really just trying to follow the idea of active life being his therapy and thinking we had gained all that there was to be gained by the time he was 8 years old. We were not seeing any more improvements with therapy and so we weaned off of therapy and tried to maintain what he had by keeping him involved in sports that would keep him using his hand and arms and keep him fit.

We had no idea that the shoulder bones could deform to cause such problems as subluxation or dislocation. We had Richard playing piano, swimming, doing gymnastics, playing on soccer and basketball teams, and more recently volleyball. As his body got bigger we realized he could not do gymnastics anymore, as his arm could not support that kind of weight bearing. At gymnastics, he suffered some sort of tear to his shoulder. The physical therapist thought perhaps it was a tear to the rotator cuff. Overall Richard’s right OBPI arm seemed to be getting a little more sore, and possibly a little less able, and perhaps he had slightly worsened posture during his 12th year. This subtle diminishing of ability was gnawing at my husband George and I, yet exercises and stretching were not really producing any results. We were not really finding any advice or solutions that were producing much result and it was getting discouraging. I was beginning to wonder if we were going to have to just watch a steady decline in Richard’s function and comfort.

The Beginning of a New Recovery Action Plan

Then one day I met a lady at school whose child had treatment at Texas Children’s Hospital. Her child was so greatly helped that it gave me motivation and confidence to start my own journey of investigation beyond the borders of my own city. She put me in touch with United Brachial Plexus Network (UBPN) and the learning curve was pretty steep. There was so much I needed to learn and it became obvious that we needed to go to the UBPN camp where I could meet and talk with many other families, doctors and therapists to see what was out there and what was actually working for others.

We learned from Dr. Nath at the Texas Children’s Hospital that Richard has a subluxed shoulder, and that the bones are not really formed properly in the shoulder due to the muscle imbalances over the years. The only surgical option that may be available to him now is the humeral derotational osteotomy.

This would give him better range of motion and posture but not really fix the shoulder problem. This was quite devastating to hear that it was too late for his shoulder as we had missed the window of time when surgeries that can help these shoulders not deform and subluxate could still be done. The changes to the bone and bone density would not accommodate any of the shoulder surgeries at his age.

One would assume that perhaps we had topped out in all that could be done with non-surgical therapy and the muscles were as balanced and as strong by now as they were going to get. I knew in my gut that “more of the same” standard physical therapy wasn’t going to get us where we needed to go. In regular physical therapy, trying to strengthen severely atrophied muscles like this is so futile.

If he could not activate- or find these muscles –how was he going to succeed at exercising muscles that he couldn’t get to work? We had worked at the winging scapula problem, the strength problem; we did stretches and ranges and had really reached a plateau. Besides it was too late- the shoulder bones were now deformed. Or was it too late? Was there really nothing else?

Figure 1a		Figure 1b
Shoulder at rest. Note wide intra-scapular distance		Marked scapular "winging" when arms are raised to mid-position (90°)

Off we went to more conferences and learned more about Threshold Electrical Stimulation (TES),
E-Stim, bracing, massage, sensory stimulation, and Kinesio taping – these were things never recommended to us before. We hadn’t tried everything! But was it too late….

Then one day Nancy Birk shared on UBPN how, at 47 years old, her old (sorry Nancy, you realize it is used as a relative term here) humeral head was reshaping after she had gained new movements post mod quad surgery. Nancy is quite a bit older than my son so maybe, my son’s bones can move and reshape. I am hoping for some “orthodontics” to be done on his arm and shoulder. But how can we get better movement and muscle balance to bring about the changes in the bone?

Then Dr. Pape asked Richard to be part of a new program that she was developing for children with OBPI. She explained to us that using several of these techniques together in the right way at the right time could give us gains we had not seen yet. She also was careful to try and keep us grounded in the fact that surgery may still be advisable or needed, and that it is not one or the other, but rather it is finding the best combination of techniques and procedures for the maximum benefits.

Threshold Electrical Stimulation (TES)

We are now using a bunch of techniques in combination that are giving us new results. Threshold Electrical Stimulation (TES) has given new muscle mass to muscles around Richard’s scapula that were so atrophied he had never really been able to activate them. Richard can now find these muscles with his brain and activate them. He is able to hold the scapula in place now with those “new muscles” while he raises his arms and does some weight bearing (only enough weight that he can still hold the scapula in place- wheel barrowing is way too much for now).

Richard had one of the worse cases of bilateral winging many caregivers had ever seen. Threshold Electrical Stimulation (TES) is one of the most amazing beneficial things we have used in helping Richard. You could not see any muscles between his scapulas, just skin and bone, and now there are beautiful bulges of working muscles doing their part to bring recovery to Richard’s shoulders! Can you tell I’m excited? (And I don’t get excited easily.) Richard has made significant gains in six months and we had really seen no gains for years.

Figure 2

Raising arms to 90 (mid-position) after 6 months of night time Threshold Electrical Stimulation (TES) and continued exercised. Note diminished scapular "winging".

Figure 3

New muscle growth after 6 months of Threshold Electrical Stimulation (TES)

Bracing

The ARK brace that Richard wears day and night – helps hold things in proper alignment so that the muscles can begin to work properly. (Described in last year’s Awareness Issue, Issue 14, pg.30.) It also helps keep the Threshold Electrical Stimulation (TES) electrodes on at night as he sleeps. Overstretched muscles do not have the same ability to get strong – so this holds things in better alignment to allow maximum strengthening in the muscles that need it. It also keeps him out of detrimental sleep positions. And my hope is that gradually the bone deformity will reform (no promises there – but we will see) as things are held in the right position, as the muscles gain new strength and balance. The unbalanced forces, that forced everything out of shape, need to be fixed, so that things can be forced back into shape- again this is my “ not guaranteed by the doctor” hopeful premise. We are seeing him move in the right direction with less winging and the raised scapula appears to be being pulled down into better alignment- which helps the shoulders appear more symmetrical. Ruth Cofre, who made the brace, is a genius in design, and her compassion is palpable.

Figure 4a, Figure 4b & Figure 4c

Front, side and back view of the ARK brace, custom fitted to Richard.

Muscle Treatments

Richard gets heated, massaged, and stretched twice a day using professional advice from physical therapists and massage therapists on stretching and massage techniques that would be appropriate for him.

We use Kinesio Tex tape to try and help loosen some tightness in the muscles that are too tight. We do range of motion, compression and strength exercises. Dr. Karen Pape has coached us along in lifestyle changes to get more sleep, get rid of stressful extras that run us short of time, and to maximize results by doing training intensives.

As we do the stretches, massages, and exercises, we pray and talk to Richard’s body parts. We are a Christian family and are looking for our God to add His “Super” over the “natural” things that we are working with for a “ supernatural” recovery. We look for God’s direction and expect His power and authority to work in Richard’s body as we move towards health and recovery.

Dr. Pape’s Approach

One of the many excellent abilities that Dr. Pape has is the ability to see the whole child. She doesn’t just see one small part – she noticed that both shoulders needed treatment and that Richard’s problems extend down the right leg and foot. These areas will be treated now as well, starting with orthotics for his feet. She was the first doctor to look at the brain and hand communication and talk about the sensory side of things. She has made recommendations to help try and reconnect the brain and hand, and has problem solved in issues surrounding writing and schoolwork. She works in conjunction with surgeons and not on a “Surgeon vs. Dr.Pape” basis .She understands how many different types of techniques can work together with great synergy, and believes in leaving no stone unturned in bringing the most complete recovery possible to the complete person.

A Brighter Future

So here we are on a new phase of our journey – excited about the new techniques that are improving Richard’s recovery, long after we thought all had been said and done. We have hope and are making gains after all this time of being at a plateau. We don’t need to sit by and agonize as we watch our son decline because he is now improving again. We will, in time, decide if surgery will be part of the picture – we need to see what these changes bring about in terms of the shoulder and what surgery may or may not be indicated. Who knows exactly where this will take us. I truly expect that Richard is on a path to recovery that will produce great new benefits, and improve his life for many years yet to come.

For more Information on Threshold Electrical Stimulation (TES) (click here)

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